[This Transcript is Unedited]
The Palace Hotel
2 New Montgomery Street
San Francisco, California
Agenda Item: Welcome and Introductions - Dr. Mays, Ph.D., Chair
DR. MAYS: Good morning. This is the second day of the hearing that is being conducted by the National Committee on Vital and Health Statistics, Subcommittee on Population.
The focus of our hearing is on health-data needs for Asian, Native Hawaiians and other Pacific Islander populations.
For those of you who are on the internet, we welcome you, and we also welcome your participation. I'll be giving you a phone number that you can call into in the event that you have any questions after you hear a particular speaker.
What I would like to do for those of you who are just signing on today is to remind you of the questions that we are going to be focusing on. Please think about this as that these questions are questions that no one speaker has been asked to address, but, instead, different speakers will respond to different parts of the questions that we have pulled together. It is our hope that by the end of the hearing what will happen is that we have the capacity to have insight into many of these issues. So just to facilitate for those of you who are on the internet, I am going to read the questions, and then I will give you the phone number, and then we are going to have introductions.
The questions for our hearing today:
For Pacific Inter-populations, what techniques are used to collect data on race and ethnicity?
How does language, population size or population geography impact the ability to gather data on the health status, health behaviors and health experiences of these populations?
What recommendations could you make to DHHS for addressing these issues?
Do you believe that there is a significant problem of misclassification of racial and ethnic categories in existing data sets? For which data sets? For which categories?
What steps, such as possibly partnerships with the advocacy groups are in place for studying the issues and for making corrections?
Is data collected on ethnicity, language spoken and national origin and ongoing surveillance data sets? On what data sets are these data collected? And we ask people about examples.
What barriers exist to data collection, analysis and disease surveillance for eliminating health disparities in Asian, Native Hawaiian and other Pacific Islander populations? What strategies could DHHS use to remove those barriers?
Is data collected on ethnicity, language spoken and national origin and ongoing surveillance data sets? On what data sets are these collected? Provide examples, and what types of health data would you recommend for DHHS to collect?
Current data-collection methods emphasize the protection of the privacy and confidentiality of survey respondents and require a certain number of responses in order to report data. Given these conditions, as applied to small populations, what number of responses would you feel would be too low to report?
What are some strategies that DHHS could use to increase the capacity for Asian, Native Hawaiian and other Pacific Islander researcher and organizations to conduct health disparities research, health demonstration and evaluation projects?
Are there any accountability mechanisms that you would recommend for the department to institute to ensure the development and maturation of the partnership relationships?
Do race and ethnic guidelines from OMB have adequate utility for the Asian, native Hawaiian and other Pacific Islander populations or is there a need to collect information using other or expanded categories?
So that is the substance of the questions.
In the event that you would like to participate, the call-in number is (877) 939-8305, and the participant code that you'll need is 278561.
So welcome to those of you out there on the internet.
Okay. What we are going to do is begin our hearing. For all of us who were here yesterday, it was a very fulfilling day. I think the committee learned quite a bit, and it really did, I think, help the committee to begin to think about what types of recommendations would be important at various levels of DHHS.
So, today, we are going to continue that process, so let's start with introductions. We'll start with Edna.
MS. PAISANO: Edna Paisano, Indian Health Service, staff to the Subcommittee on Populations.
MS. HEURTIN-ROBERTS: Suzanne Heurtin-Roberts, the National Cancer Institute of the National Institutes of Health.
MR. HUNGATE: Bob Hungate, Physician-Patient Partnerships for Health, and a member of the subcommittee.
MR. LOCALIO: Russell Localio, University of Pennsylvania, member of the subcommittee.
DR. MAYS: Audrey.
MS. BURWELL: Audrey Burwell, Office of Minority Health, co-lead staff to the subcommittee.
DR. MAYS: Nancy.
MS. BREEN: Nancy Breen. I'm an economist at the National Cancer Institute, specializing in health disparities, and I'm staff for the subcommittee.
DR. MAYS: Dale.
MR. HITCHCOCK: Dale Hitchcock, Office of the Assistant Secretary for Planning and Evaluation, HHS. Staff to the subcommittee.
MR. LENGERICH: Gene Lengerich, Penn State University, a member of the subcommittee.
MS. MURRY: Carol Murry, Social Science Research Institute, University of Hawaii.
MS. SORENSON: Catherine Sorenson, Department of Health, Hawaii.
MS. YU: Elena Yu(?), San Diego State University and Johns Hopkins University.
MS. WU: Ellen Wu, California Pan Ethnic Health Network.
MS. WHITE: Gracie White, NCHS, staff to the Subcommittee on Populations.
MS. WILHIDE: Sheryl Wilhide, Magna Systems, Inc.
DR. MAYS: Good morning and welcome to all the audience members.
Ellen Wu is with us today, and Ellen is actually the person who will be starting us off. Ellen, do you want to join us up front here? Do you need to set up any -
SPEAKER: Actually, if she needs a little more time, our other two speakers have agreed to go up -
DR. MAYS: Who?
SPEAKER: Carol Murry, Catherine Sorenson. If we do.
DR. MAYS: Well, what you need to do is find out her time, whether she needs to leave at a certain time.
Ellen, do you need to B okay.
Maybe we'll do a couple of other things while you get set up, so that - because I know that people are going to be leaving today.
A couple of things that I think we want to think about is - Gracie, do we have our letter yet from Dr. Cooper?
MS. WHITE: No, not yet.
DR. MAYS: Do you have a copy of it? Okay. Make sure that after lunch, we are going to talk about the national children's study. So we are looking for the letter that we had in our meeting.
And then the other thing that we'll talk about is geo-coding.
I think that in the discussion on geo-coding, part of what we want to talk about is the relationship between geo-coding and some of the small surveys, privacy, confidentiality issues. Also, kind of how more broadly geo-coding can be used, should be used to increase the possibility of data for some of the targeted populations.
Other issues that you want to put into geo-coding, Eugene?
MR. LENGERICH: Just as a sub-point under that second one that you made, and that would be training of the use of geo-coding, particularly by individuals who are heavily engaged in the racial and ethnic minority analysis.
DR. MAYS: I think that is important. As a matter of fact, I think -
Hi, Ellen. How are you? Welcome.
Let me just ask a question here so that I can get this straight, because I know that you live here, and sometimes when people have presentations they have a very specific time they need to get out of here. So do you have a time that you need to depart? You have something right after this?
MS. WU: I was planning to leave right after. I have an 11:00 conference call, but if someone else needs to go B
DR. MAYS: Okay. All right. Okay. So we are going to stick with the schedule then. All right.
All right. For those of you who had a discussion about B at one point in time, we had a discussion about Prop 54, and I think someone even brought it up yesterday. The group that was very instrumental, did a lot of the work in terms of Prop 54, making sure that it was overturned, is actually the California Pan Ethnic Health Network, and Ellen Wu is with what we call CPEHN. So we welcome you.
MS. WU: Thank you.
DR. MAYS: Because we would have a different agenda if that had not occurred. So we are very happy to have you here. So thank you.
Agenda Item: Healthcare Quality Indicators for ANHOPI Populations - Ellen Wu
MS. WU: Thank you for inviting me.
I'm Ellen Wu, the Executive Director of CPEHN.
I do want to preface that I am not a researcher and I'm not a data geek. So what I was going to do here today was just to talk about CPEHN's work. We do policy advocacy work in California on multi-cultural health issues, and in relation to our work, the work that we have done both on data issues such as Prop 54, and also our need for data in our work. So that is kind of how B and it's a really quick presentation.
I just wanted to point out that the title, I specifically left out health data because I think we need to start thinking broader than health in terms of getting data by race, ethnicity to look at our population's needs, and one of the things I think that is important to emphasize, especially with Prop 54, is because Ward Connerly is planning to come back with another proposition, he says, with a broader, more concrete health-exemption, and the health community right now is kind of standing firm saying it doesn't matter because we need all types of data in terms of our population's health. So that is B I just wanted to point that out.
Really quickly, CPEHN was established in 1992 by who we call four ethnic organizations, our ethnic partners, the Asian and Pacific Islander American Health Forum, and I think you heard from them yesterday; the California Black Health Network; the California Rural Indian Health Board and the Latino Coalition for Healthy California, and they came together when they saw a need for a multi-cultural voice in state policy.
So we are a network of both community-based organizations, providers and policy experts. So we all work together to try to advance and move forward a multi-cultural health agenda in California.
Our mission is to improve access to health care and eliminate health disparities by advocating for public policies and sufficient resources to address the health needs of communities of color in California, and just - we break our policy agenda down into these four areas, but, as you can see, all four areas are interrelated to each other. Health-disparities work, of course, we need data to identify health disparities, and then access and cultural linguistic services go directly towards eliminating health disparities, but just for the ease of us thinking about our work, we have broken them down into these four areas.
And stop me if you have questions at any time.
So I am just going to highlight the policy work that CPEHN has done that is related to our data efforts.
The Department of Managed Health Care, we do a lot of administrative advocacy. So you'll see here we work a lot with administrative agencies. So the Department of Managed Health Care was established out of the Patient Bill of Rights a few years ago, and I think California is the only state that actually has a regulatory body for health plans. So that is DMHC, and then Medi-Cal and Healthy Families. Healthy Families is California's SCHIP. I think you all know that.
Prop 54, I'm glad to hear you only touched on it a little bit, because it was one of our major efforts last year, and then we have community convening and different events that we do.
So, really quickly, the Department of Managed Health Care, the other big kind of victory we got this year was the signing of SB 853, and this bill actually gives the department authority to regulate cultural and linguistic services in commercial health plans.
So we are going to be watching the department pretty carefully in terms of the regulations that come out from that, but as - a very major part of it is the health plan's collection of race, ethnicity and language preference of their enrollees.
Now, how they are going to do that, I think is still to be worked out. AETNA is working on that, but we were very clear that you can't meet the needs of your diverse membership if you don't know who they are, and it's amazing to us that they don't know who they are. So when we were at the negotiating table, you know, in terms of thresholds for translating documents and interpreters, we had a lack of data to work with. So that is one of the components of SB 853.
The other is the availability of translated materials and interpreter services, and, unfortunately, we were unable to weave cultural competency in there as a requirement. So, right now, it's just that the health plans need to report what they do, and DMHC was very shy about trying to even monitor that work. So that was unfortunate, but it's all in negotiations.
Grievance regulations. The department put out grievance regulations last year, and as part of our comments, we wanted to make sure that limited English proficient members have had access to the grievance process in the health plans. So the health plans need to report on how they are going to make them accessible and the language services that are available to the members.
The other piece we wanted in there was for the department to require the health plans to collect the race, ethnicity of the members who called in about grievances, and then, on top of that, whether or not the grievance was a result of a cultural and linguistic barrier.
Now, DMHC lawyers thought that they didn't have the authority to do that, and I don't know if any of you followed that last year, but the director was very aggressive in terms of regulating health plans and got sued many times by the health plans. So they were very careful about that. So, unfortunately, that was not a part of the grievance regulations, but the language services are.
And the HMO help line, there is an 800 line that is run out of DMHC, and they take complaints or answer questions regarding people's health plans, and we are currently - we did a training with them regarding cultural and linguistic regulations, and we are currently now, after Prop 54 was defeated, we can work with them in terms of their collection of race, ethnicity data by the people who call to be able to identify patterns, and our main concern is that these types of hot lines are not accessible to limited English proficient, and maybe culturally - you know - there are barriers in accessing them, and then identifying whether or not the calls are related to a cultural and linguistic barrier.
So that is all our work around the Department of Managed Health Care.
Medi-Cal and Healthy Families, we are working closely with Medi-Cal to try to - this hasn't been a whole lot of success, but to have them analyze their encounter data utilization by race, ethnicity and language preferences and to get them to actually require their health plans to do that also, and, unfortunately, they are not quite there yet at progressing, but they do think health disparities and identifying health disparities is an important issue, and they are moving along in that track, although the administration is going to change a lot next week. (Laughter). So we are going to look at that and see how that impacts our work, probably starting from scratch.
And then the Healthy Families Quality Work Group - I actually wanted to point this out as a model - they actually - when the heath plans report on their HEDIS(?) requirements, Healthy Families then takes that data and matches it with their membership data with the race ethnicity and language preference, and they do put out a report with the HEDIS measurements by race, ethnicity. I'm not sure if it is plan specific. It might be kind of just state wide, because of the sample size issue, et cetera, that you all know about, but, you know, we have talked to HEDIS about that or NCQA about that, and I think that that really is going to be the way to go in the future. So we are big advocates around that.
So Prop 54, I think you all know what it would have done, in terms of eliminating the collection of data.
CPEHN's work, we sat on the steering committee of the larger campaign, and it was, I think, a unique experience because when we first got to the table, there were very few health people represented there. There's a lot of civil rights groups and a lot who worked on 209 and 187, and it was really important at this point that kind of everybody put - and it was really amazing that this worked B that everyone put their own agendas aside and so that it wasn't made a civil-rights issue, and that when we found - as a result of our polling data B that the health message was the message that most resonated with the voters, that that is what everyone stuck to, and it was very clear, and we didn't - and, you know, we tried to do research and get data to back it up, and then, ultimately, it was like it's just - it's going to hurt your health, you know, and we don't have to get into anymore details about that, because a lot of people don't really - wouldn't really understand the technicalities of that.
DR. STEINWACHS: Living on the East Coast, I just hear from Vickie about the problems in California. (Laughter).
Could you say a little bit more about the nature of the - how you communicate or what the message was that related health to the collection of race, ethnicity data that got people to listen and got them to respond positively?
MS. WU: We didn't, to be honest. Data is not sexy. I think the collection B
DR. STEINWACHS: We have always found that problem but Vickie has helped us. Vickie has helped make a difference. (Laughter).
MS. WU: You know, there is the privacy issue. There's the - people checking - not wanting to check off the box. I mean, his - Ward Connerly's message really resonated, too.
DR. STEINWACHS: Yes, keep government out of my life.
MS. WU: Right. And, luckily, he had no money. So, you know, that was a big, big factor. The opposition campaign ended up having a lot more money and was able to get former Surgeon General Koop to do the ads, and it wasn't about data. It was just that we need this information for your health. I mean, that was the simple -
DR. STEINWACHS: Sort of simple, straightforward -
MS. WU: Yes.
MS. BREEN: Information, rather than data.
MS. WU: Yes, yes, and we didn't use the term health disparities.
So if you look at other polling data, especially by the California Wellness Foundation B I think it's still up on the web site B using that message, basically, didn't sway anybody. It could have gone either way, but kind of just basic B and we - although, CPEHN, you know, we specifically work with communities of color. We had to put that agenda aside and go, okay, our main target audience are the voters, which a lot of people have an issue with. We had a very, very fast turnaround time, though, to get the message out, so we tried not to be divisive, you know, didn't focus too heavily on the racial, ethnic health disparities, but, you know, did a lot - the Alzheimer's examples and breast cancers examples and, you know. So that - I think that was how we messaged it. Yes.
DR. STEINWACHS: That's helpful. Thank you.
MS. WU: So then we went up B did a lot of presentations and we organized a few press conferences, and I think it was important to mobilize the health community, because they have a lot of credibility, and what I would say in my presentations is, you know, it is very rare when they all come together, the health plans and the providers and the advocates and the associations all come together at one table and fight for the same thing. So I think it was very, very strong. You know, and we kind of developed partnerships where we wouldn't have normally had them with the CMA and the -
DR. MAYS: The California Medical Association.
MS. WU: Sorry. And the different voluntary associations B American Lung Association, Cancer Association, et cetera. They have the names.
So that was our work on Proposition 54.
And then events, we have had a couple related specifically to health disparities or data issues. We held a legislative briefing around health disparities in march of 2002 in Sacramento, and that was extremely well received. We had 21 leg staff there and about 100 community members come, and our ethnic partner organizations presented data on their community.
And then, almost a year ago, we had a convening, a community convening, around the policy implications of multi-race categories on health disparities research and resource allocations, because I think while it's really great strides in having people be able to truly identify, not just pick, you know, race, ethnicity, but be able to identify who their mixed-race, I think we still are unsure about the implications of what that means in the - what? - six different bridging methods that OMB has and the research in how people get identified into different pots. So we are probably going to follow up on our work around that.
So, really quickly, I just have a few recommendations, basically based off of the list of questions that I got and my different B our experience around this issue. I think it is important to dispel the stigma and myth about the collection of race, ethnicity data. That is why we couldn't really talk about data per se in Prop 54, and a lot of people don't want to be able to identify their data, but it's really important to get the word out that otherwise we won't know. We won't know discrimination when discrimination happens, and we won't know about the disparities.
So B and, you know, the health plans and different agencies use this as an excuse to not collect the data, you know, that it'll put people off, et cetera. So I think there needs to be a lot of work done around consumers and consumer groups to work on this issue.
Do not let the sample population size limit research conducted, and I think this - you guys were specifically talking about the API population and how right now it is generally aggregated, but then if you get down to smaller sample size B Filipino, Chinese, Pacific, Japanese B that it gets too small to generalize any information from it, and my whole stance is, well, but that doesn't mean that the information is not important, and that - even looking at that data with the five - you know - Filipinos in San Diego, it can tell us where more research needs to occur or maybe that a community-based organization should do some outreach in a particular way.
Actually, let me - back to Prop 54. One of the examples we used was the - and let me know if you have already heard this - the San Diego School District survey, and it was a behavioral risk assessment. So it wasn't specifically about health, and it was administered by the school district, and it basically found that the API community had higher likelihood of suicidal thoughts, and then, when they kind of drilled down, more specifically, the Filipino community had that. So there was a community-based organization, a union of Pan-Asian communities, you know, took this information and applied for a grant, and now does cultural-appropriate outreach to that community. So just to say that any data is important, whether or not we can kind of generalize from it.
The researcher must partner with policy advocates in community-based organizations to not necessarily do research for research sake and to really make sure that they have some kind of policy implications around it or inform policy work, and that it is really relevant to community-based organizations work and what they are doing.
MR. HITCHCOCK: I would ask a question about how would you recommend that researchers B Federal or otherwise B choose the policy advocates in community-based organizations that they work with or how could they make an attempt to even find out who all the players were? What would your thoughts be on that? I mean, I'm not asking for anything definitive here, but advice.
MS. WU: Right. Well, I think, generally, the communities are very small in working on this issue. So if you kind of reach out into those different communities, you can probably get a handful of names that are leaders in those communities, and one of the projects CPEHN worked on was actually looking at standardized satisfaction surveys and whether or not they got to the cultural competency of a health-care organization, and what we did was we brought representatives from community-based organizations and policy advocates and researchers to the table to form an advisory group, so that we were able to help the researcher frame the questions they were going to ask and answer through the research, and then they kind of went off and - you know B did their thing and came back and reported, and, you know, we had the dialogue.
So that is kind of a method of doing that, and in terms of outreach, you know, I guess I can only speak for myself and my experiences with the policy advocates and CBOs, and this is a conversation that has been going on for a while, especially kind of for California, the UC system's relationship with the CBOs and the people on the ground and that we hope to have stronger ties and to really do more partners, and we welcome them.
Did that answer your question?
MR. HITCHCOCK: I think so. Yes, I mean -
MS. WU: So the other one is recommendation, must consider cultural, linguistic services, and, consequently, the collection of race, ethnicity data as integral to the provision of quality health care, and that all of these issues should not be marginalized kind of out sitting on its own, but it should be really incorporated within what we mean by - when we talk about quality health care, because you can't provide quality health care without knowing your enrollee population and speaking the language of your patients, and it is amazing how much research needed to be done to prove that when I think it is - you know B very obvious for those of us who can't even - you know B communicate with their doctors in English language.
In my beginning B
SPEAKER: - exactly - hypothesis B
MS. WU: (Laughter). Nobody can anyway.
Work across agencies and departments, again, to standardize and collect race, ethnicity data, and then to mandate the collection of race, ethnicity data, one of the ideas CPEHN has for cosponsoring a bill, possibly next year. We are looking into it, especially on the wake of Prop 54, kind of taking advantage of that, is looking at - a survey has been done by OSHPED(?) in looking at the agencies and all the different programs, collection of race, ethnicity data. We hope to get the survey results, but what we will probably find, we think, is that most programs collect it, but it's not mandated, and so - and it is probably not standardized across programs. So, you know, moving towards making it mandatory would really help our work and the standardization.
And then, lastly, is our contact information. So that's it for my presentation.
DR. MAYS: Great.
Questions? Start here. Russell.
MR. LOCALIO: Good morning, and thank you for your presentation.
I have a couple of clarifications. You mentioned that there is a stigma against - I guess on the part of the patients that would prevent them from wanting to volunteer racial and ethnic information, but it seems to me, given the known genetic component in various diseases, as well as the known environmental component, that every physician who is doing a good job in getting a decent history would want to know not only ethnicity, but your history, country of origin, where you have traveled.
The issue came up yesterday about Thalassemia and it is traditionally from people - Mediterranean background, but there are many other diseases that are like that. So why is there still such a resistence if it seems clear that this is just part of good medical history? Is the problem taking the history and putting it on a piece of paper in somebody's record or is the problem having that record abstracted into a computerized format and then reported to somebody? Do you understand?
MS. WU: Yes. I think there are - from what I have heard, there are a couple of issues surrounding it. One is just kind of basic discrimination, and, if the health plans are going to ask you, the whole issue of redlining, or, you know, actually, the Department of Insurance in California has, in statute, that the health plans can't collect race, ethnicity data because they can't be able to say I don't want this particular population versus this other population.
So I think people of color are very sensitive to that, and we actually - in our work in Prop 54, we actually stayed away from the message of your doctor needs to know your race, ethnicity because of biological factors or, you know, where you have come from, because there is also the push back, well, I want to be treated like everyone else. I want to be treated just as the individual sitting here.
And you are going to hear examples, you know - I have my own example. I went into the dermatologist, asked to check the mole, and, basically, the dermatologist said, well, Asians don't actually have a high risk of skin cancer, so you don't have anything to worry about, and he didn't ask me whether or not I wore sun screen, how long I've been in the country, how many generations I am. So it's that kind of experience, and I'm not saying that everyone has it. I'm just saying it's a factor in terms of the collection of race, ethnicity data and that people use that as an excuse to not collect it.
MR. LOCALIO: Well, it seems to me maybe there has to be much more education towards individual potential patients and distinguishing between collecting data upon application for or enrollment in a health plan and collecting the data once the person has been enrolled and then seeks care. Seems to me the first situation you run into many problems of fear of discrimination, redlining, but the second issue that's basic health information that ought to be collected and documented in somebody's medical record however you define the medical record.
MS. WU: Yes, I totally agree, and I think that more education needs to be done of why that is important.
I mean, again, Ward Connerly's message that it is a privacy issue and that race shouldn't matter really does resonate with people. They don't want race to matter because it does so much, I think, you know, in any given situation. So -
MR. LOCALIO: Even if it does matter, they don't care. I mean, we know it does matter. Otherwise, why all these - what are we doing with genome, I mean -
MS. WU: I think they will care.
MR. LOCALIO: B it does matter.
MS. WU: I think if a credible source and community comes out and there's a public education campaign, I think they will care.
MR. LOCALIO: Yes.
MS. WU: I mean, Prop 54 being defeated showed that people got it in some B on some level, people got it.
MR. LOCALIO: Okay. Thank you.
DR. MAYS: I think, one issue is the difference between education and protection, and I think part of what is a problem is that if you have had the experience of being redlined, discriminated against, et cetera, even if you know you have to weigh out would - not receiving what you think is adequate services benefits you as much as receiving what you think would be better if somebody knew your race, and most people will go on the other side.
So one of the things B I mean, this happened in terms of like - in HIV, when people were like, well, you know, to know is better, and what a lot of the community advocates said is that, in addition to education, we need to have resources for litigation, so that in the event that these things don't work the way you are promising that they work, that the person, as an individual, isn't bearing the burden of trying to undo them, but, instead, there is some major ombudsman or legal resources in order to help them then to fix what has been wronged.
MR. LOCALIO: I think my point is that if you find that people are reluctant to give this information at the time of enrollment, then that would not be a good point at which to try to collect the data, and you would want to move the point to some other point along the data-collection stream at which it can be collected without resistance on the part of the patient, with the various protections in place, and it will be of good quality. Otherwise, we are going to have misclassification, which you don't want, or we are going to have just that missing data field, and its other, and other can get very big and it doesn't help you at all.
MS. WU: I tell you, I would love mandating the collection of race, ethnicity data and language preference on a medical chart. I mean, that - you know B and then that information gets up to the health plans. I would totally be for that.
MS. BREEN: It strikes me, also, from the discourse, including what Vickie said about having the right to litigate in the case of perceived abuse - what I was going to say is I think that maybe as we are thinking about collecting - and I would like to hear your view on this, because it's one of the things you mentioned B as we are thinking about collecting data that maybe that is an area where we need cultural-competency training for the physicians and for the people at the front desk, because surely if someone experiences an example like you did B and I think probably most people of color have experienced at least one example about or their brother or their sister or their mother or their father, everybody is familiar with that, and those of us who - I mean, it's common. It's not an uncommon thing. It's not an unusual thing, and so it needs to be respected as part of what is going on, and so it strikes me that maybe that - this should be a sort of a two-pronged effort of not simply collecting the data, but collecting it in a way so that it is collected in a respectful way and it is used in a respectful way.
MS. WU: I absolutely agree, and, actually, it reminds me of the training that we did with the DMHC help line, because there was a customer-service rep who was basically - seemed very opposed to trying to collect this data, because he's like, oh, people are already angry by the time they call us, and, you know, we are just going to ask them another question and et cetera, and it's like, but you can do this in a very sensitive way and you can take the time to explain why it is important, why the information is really important, and how it would be used, you know, and I think it is going to be a long process, but absolutely.
And, you know, there are several help lines and consumer hot lines that currently do that work that can serve as a model.
DR. MAYS: Suzanne.
MS. HEURTIN-ROBERTS: I think - I would like to get back to the question of guarantees or protections. I think there needs to be some guarantee that the data will be used appropriately, rather than just saying, trust us, you know, we are your HMO. We'll be okay with you. I think that there could be some policy work where the HMOs and other systems would be required to draft some statements about limiting how their data would be used, for what purposes, what they would not use the data for, so that if litigation occurred, there would be something clear about what they were required to do with their data and what they were allowed to and what was not allowed. I think there needs to be a greater guarantee, rather than just trusting the HMOs or providers to be -
MS. WU: Do the right thing.
MS. HEURTIN-ROBERTS: B beneficent. Yes.
MS. WU: HIPAA does a little bit of that, however well that is being implemented. That's actually one of the other points is I don't know how closely you all work with the HIPAA -
DR. MAYS: I don't want to say we are HIPAA, but just trust us. We are close to HIPAA, joined at the hip. Joined at the hip.
MS. WU: I have heard a lot of complaints by health plans regarding the HIPAA list of race, ethnicity data. That's all I B you know B I haven't really done a lot of research into it, but that seemed to be possibly problematic, but, anyway.
MR. HUNGATE: I have two related questions.
You talked in one of your slides about the problem of HMOs and their complaint lines having appropriate language and cultural sensitivity, and I think it is a well-identified problem.
I wonder whether the focus on the HMO is the right place, in that each of those is going to have a fairly small sampling of some of the languages, and whether, in fact, there could be a service provided for the health plans which did culturally-sensitive complaint, whether a larger organization could do that better and do a service for the HMOs that would help them.
Follow on question and thought: I am impressed by the difference between when I identify who I am for my reasons and when somebody else asks me to - what my identity is. It's a different context. There is attention to personal health records where one might want to say, here is who I am, and help the sensitivity of that. It seems to me that that has to be done through a culturally-sensitive avenue in order to work well, and so, again, I wonder whether collection at the HMO is the absolute best place or collection through a culturally-sensitive point and then transmission to the organization that could use it, and I don't know whether those thoughts get discussed, and that is really my question.
MS. WU: Well, there is definitely the issue of how much HMOs should be responsible for these things, because a lot of - I mean, the major points of contacts are with the actual providers. So a lot of HMOs kind of throw up their hands and say, well, we don't really - we can't change much of this.
I think the HMO help line at the Department of Managed Health Care was supposed to be kind of the 800 number that people can call if they weren't comfortable calling their health plan. I don't think that when - when things like these are developed and implemented, they don't think about kind of the diversity of the California population. They think about translation of the documents, but whether or not a customer-service rep is there in speaking that language is a different issue, and a lot of people find that a problem.
So I think it would be a really great idea, in terms of making sure that there is a safe place that is culturally appropriate for them to go, but, also, you know, a lot of education on the community level to encourage people to speak up, you know?
You know, I have had a health-plan representative actually who is responsible for the cultural and linguistic services say, I want my members to call and complain, because then I have data to provide these services, because, right now, the health plans don't hear from them and so they are not going to do anything about it. So it has to come from both ends. That's really important.
And, you know, whether or not we like it, the health plans are the administrative bodies and have all this rich data. So - you know B maybe the collection should be at a different point, like the provider office, but it needs to definitely get back up to the health plans, because that is where they are collecting all of the different services that happen.
MR. HUNGATE: I think about all the telemarketing calls I get from India, you know, which is far away, and, you know, that is - it is still in my language and it's done, but the point is that people move things to other places for different reasons, and cultural sensitivity may exist in other places than where it needs to be, and I'm thinking about how technology might change that might be a way to help.
MS. WU: Right. Well, as we all know, the health-care industry is far behind in technology - right? - the use of technology. So -
MR. HUNGATE: (Laughter). And maybe not going to change very much from within.
MS. WU: Well, that is good to know as an advocate. (Laughter).
MR. LENGERICH: A couple of comments or some questions.
Building on this conversation here and what you had said earlier, could you say something about where the purchasers of the health-plan services weigh in in this discussion, the businesses, and what are they asking for? Are they putting up barriers to these sorts of data being collected, because the health plans have various customers that they serve and one of those is the businesses - what they provide.
The second question is - and this comes out of my ignorance, so bear with me - but if you could talk a little bit about language preference versus language proficiency, and I expect that there are many people that are bi-, tri-lingual here, and so how do those B and, certainly, they are probably not as proficient in all of them. So how do those sorts of issues get weighed in as you are collecting data or as you are providing services, then, as well, that can be communicated?
MS. WU: You know, medical - the purchasers are leaning towards this whole report card in quality health care issue, and I don't think the collection of race, ethnicity data has gotten, so far, on the radar; that is, it is at the employers right now. That is probably a pressure point that the advocates can use, because if they start saying to the health plans, we want you to start looking at your quality measurements by race, ethnicity, and we will collect that data on the enrollment form, et cetera, I think that would probably be a really good way of marrying those two, but, as far as I have - I have not heard from that community about that issue.
And then - oh, language proficiency versus preference. So when I reference language preference, there - you'll see on the Census a lot of people say they speak English well or very well. Whether or not they can actually communicate with a provider, with a doctor in English is, I think, questionable. I think a lot of people like to think that they speak English well, like my parents like to think they speak English well B (laughter) - but they don't necessarily - both in terms of medical terminology, but also, you know, accents on both ends of the provider and the - you know - patient.
So when we talk about language preference it is what language you are most comfortable speaking, and the question that people use is what language do you speak at home. So that is what you are going to find on a lot of surveys to get at that.
And then the proficiency, you know, there has been a lot of work nationally and statewide on how you assess both the bilingual proficiency of providers and provider staff and interpreters. We are still working on that - (laughter) - and so I don't know how to quite answer that question in terms of determining proficiency, but it's - you know - it's on several levels, both - and should have a cultural component, and it should have the medical-terminology component when you are talking about a health-care setting, et cetera. So did that answer your questions?
MR. LENGERICH: Yes. Thank you.
DR. STEINWACHS: You raised something in my mind when you and Bob were discussing the collection of B or maybe it was Russell B the collection of race, ethnicity data and where and how and so on, and I thought you made an important point, and I was going to see if I could get you to maybe reemphasize it or react to my perception, and that is that you are trying to get people who are collecting it to explain to the person why it is being collected, because I would suspect that many of us might represent ourselves a little bit differently, depending on why the information is being collected.
My wife accuses me, in another context, of confusing people about where I'm from, and so I consider myself part of rural America because I was born in Boise, Idaho. I grew up on the Southwestern desert in Tucson. I used to live in Texas and consider myself a descendent of a Texan, and I lived on the East Coast, and so there are people who think of me as either a Texan, an Idahoan or they look at me and say, oh, you come from Arizona. I say, well, I was born in Idaho. Huh? You know, and so I could just think about either in terms of specificity whether you pick one category or you - or lay out more detail what is the mixture of racial, ethnic backgrounds, because it seems to me this issue of understanding why - why do you want to know? - not so much an issue would I misrepresent. Well, maybe I would under some circumstances also, you know, who or what I am.
The other piece which I hadn't thought about until this discussion was going on is, you know, there are people who are adopted who don't know who one of their parents are, and so on, and just as we were talking here it occurred to me, you know, how do you designate that, that maybe I don't know who my mother or father is or I have no - and so do I B how do I answer that 50 percent of me may be unknown, 50 percent may be known -
MS. WU: Right.
DR. STEINWACHS: B and so in a clinical context that Russell was talking about, you could see why you would want a level of specificity potentially that goes beyond what we think of as the OMB expectation.
MS. WU: Right.
DR. STEINWACHS: And so I think this idea of how do you message why is it you want this information B and I may respond differentially, based on why it is that you are asking it.
MS. WU: It is really important, and, again, in our work on Prop 54, I think the health message and the importance of health and how it relates to the health care you get and the health of your community and your family will resonate with people, you know. That is where you are going to get them, and so - you know - and that may cut across other disciplines and industries, but I think health care is a good start of it, and it's important. So, yes, I think if we start all moving in that direction that would be really great.
DR. STEINWACHS: To the extent my comments have validity - and I don't know B you know, it also then talks about using information collected for one purpose at one time across other settings and an interesting sort of question we haven't talked about of if you collect it for statistical purposes in a health plan is that the information that physicians ought to rely on in the encounter and not bother asking you any more, because they say, okay, here I see that you are - you know - X, Y and Z.
MS. WU: That's true.
DR. STEINWACHS: Yes.
MS. WU: Right. I mean, there's that whole issue with the Medi-Cal data, Medi-Cal Managed Care, because it is collected in the social services agency. So everyone thinks that it is not that great data.
DR. STEINWACHS: Because you can look at me and tell me who I am, right? (Laughter).
MS. WU: Exactly, because the workers apparently just check - you know, decide on their own and then that data gets all up at the state and the health plans and the providers - and that's who you are, you know, for the end of time, while you're in Medi-Cal. So I think that's a really good point.
DR. MAYS: Let me just ask, there are a couple of things that - in some of the previous slides - that you talked about that I think would be helpful for the committee to be able to consider. One is the policy work that you have done around the multi-racial categories. I don't know if that is something in which you have something that you could share with us, because it's something - as much as we have been talking about race and ethnicity, we occasionally also have to deal with some of the multi-race issues, in terms of what kinds of things should we be talking about, and it seems like you are kind of ahead of the game on that one.
And then the other one was the slide that you had about the quality work in terms of what you are doing around HEDAS(?) and the collection of data on race and ethnicity. That would also be useful, because we are right in the throes of some work on that. If there is anything that you could share with us on either of those fronts, it would be very useful.
MS. WU: In terms of our multi-race - it was - we haven't quite gotten to the policy implications. I think we have teased some things out. It was a four-hour convening with a lot of information thrown out there about the Census and bridging, and the California Health Interview Survey was also discussed, because they also do the multi-race, but they have the additional question: Which one do you most identify with.
DR. MAYS: Most identify, yes.
MS. WU: Most identified.
So - and I think you have heard from CHIS at one point.
DR. MAYS: Yes.
MS. WU: Because they have done a lot of work on it.
So a year later, we are still working on the executive summary, and we are still doing followup to that comeaning(?), but there is information on the website -
DR. MAYS: Okay.
MS. WU: - on our website about that comeaning and, hopefully, in the next few months, we will do some followup work with the core people who really got the issue to look at the policy work, and -
DR. MAYS: And then the HEDAS piece?
MS. WU: Oh, just really quickly, we had a researcher, a professor from Florida come in and talk about his health disparities research, and he was laughing because - you know - they don't have a CHIS out in Florida, and he kind of just needs to use the data, whatever is available, and so he really emphasized standardization of data. That was really important to him, in terms of his work.
As far as our quality work, we have really tried to integrate cultural and linguistic services as a part of quality indicators. We have done that with the Office of Patient Advocate and both Medi-Cal and Healthy Families.
We have just started discussion with a representative at NCQA about their work on identifying some quality indicators around language access, but also in looking at integrating the race, ethnicity in HEDAS, and, again, they are going to come up with the issue of small sample size, which, you know, I hope won't prevent the work from moving forward just because we have a small sample size. So that is the kind of limit that we have - where we have been working with on that.
DR. MAYS: Okay. Any questions for any of our audience participants?
Okay. Thank you very much.
MS. WU: Thank you.
DR. MAYS: It's been very useful. Thank you.
Okay. We'll move to - do you need to set up slides or anything?
Okay. Let me get my - okay. We are changing the schedule a little bit. So now it's time for us to talk about Hawaii, so I think we'll enjoy that. Catherine Sorenson is with the Department of Health with Hawaii, and she is here to talk about some of the health and data needs in Hawaii.
Thank you.
Okay. Does she need to set up her presentation? No, he just did hers. Does she need to set up her presentation?
Then let's let people who just came in introduce themselves. We have a couple of people.
MS. HUNTER: Yes. Mildred Hunter, Regional Coordinator, Office of Minority Health, the Office of Public Health and Science, Region 5.
DR. MAYS: Thank you.
Is there someone else in the audience that hadn't introduced themselves?
MS. HUNTER: Oh, no one heard me?
SPEAKER: We didn't have a mike.
MS. HUNTER: Oh, I thought everyone heard me. I'm sorry. Good morning.
DR. MAYS: We're on the Internet.
MS. HUNTER: Yes. Mildred Hunter, Regional Coordinator for the Office of Minority Health, Office of Public Health and Science, U.S. Department of Health and Human Services, Region 5.
DR. MAYS: Welcome.
MS. SAGACHELLION: We all have these long names. Marlos Sagachellion(?). I'm a senior Equal Opportunity Specialist with the Office for Civil Rights with the Department of Health and Human Services in Region 9.
DR. MAYS: Welcome back.
Okay. We are going to start. We will definitely try and get you wrapped up by 10:30, if possible, so that you can get on your way, because I realize you have something else.
Okay. Scarlett Lin Gomez is with the Northern California Cancer Center and I guess is talking about Asian American Mental Health?
MS. GOMEZ: No. I think that title was on there from a previous agenda and didn't get changed.
DR. MAYS: Okay.
MS. GOMEZ: So I hope you're not disappointed. DR. MAYS: Cancer Research Among Asians.
MS. GOMEZ: Right. I'm going to be talking about B
DR. MAYS: We thought you were talking about - I was surprised by the title. We thought you were talking about cancer, but our thing says mental health. So -
MS. GOMEZ: So I hope you're not disappointed. I'm not going to be talking about mental health, but B
DR. MAYS: No, we're fine.
MS. GOMEZ: Okay.
SPEAKER: We're not disappointed -
MS. GOMEZ: Okay. From the cancer center, right. It makes a little bit more sense. Sorry.
DR. MAYS: Yes, from the - that's why I was a little surprised also, so, but anyway. Okay.
MS. GOMEZ: I also - my second qualification is that I'm an epidemiologist and I think my talk - as I sat in on the latter half of the previous speaker's talk, and I was like - some of the slides for Hawaii, and I think my talk is going to be a little bit different. In fact, very different. It's very much data driven, and because I am an epidemiologist, we B as a breed, we love data. So excuse me for that.
Agenda Item: Cancer Research Among Asians - Scarlett Lin Gomnez
MS. GOMEZ: I'll just delve in.
Much of my research is, in fact, focused on methodologic issues to document the quality of our cancer registry, and, also, we have looked at hospital administrative data on race, ethnicity and birth place. So I think this transitions really well with what you guys have all been discussing.
We have also been focusing on measures of place of birth. That is a variable that we collect in our cancer registry and we have a lot of interest in the utility of that kind of information.
My personal interests have been on using these data to understand ratio ethnic variations in cancer, and I have been focusing, in particular, on looking at cancer patterns for disaggregated Asian subgroups, and this is what I'll be presenting to you today, some of the results from our research.
Before I start, I want to just give you a quick overview of our organization, Northern California Cancer Center, just to give you some context for the research that we have been doing.
We are located in Union City, which is just 45 minutes south of here, and we are a non-profit organization that is dedicated to understanding the causes, prevention and the detection of cancer, and we also are interested in outcomes; that is, to improve the quality of life for patients who are living with cancer.
We operate in one of the population-based cancer registries, part of the Sierra Surveillance Epidemiology and Results Program. We are also part of the statewide California Cancer Registry.
Our functions include providing information and education to the public about cancer prevention. We also talk about diagnosis, screening and treatment, and we also conduct a great deal of research, and this is - the group that I am part of, much of our research, in fact, used a valuable resource, that is the Cancer Registry, and I am one of the research scientists or, slash, epidemiologists on the staff.
So where do our data come from? The data that we use in doing both routine and more specific targeted surveillance studies come from, obviously, the registry, which provide the data on cancer cases. With their recent expansions, the Sierra program now covers 26 percent of the U.S. population, but because its regions were selected to over-represent minority groups, the registries actually cover 53.3 percent or 5-1/2 of over 10 million Asians in the U.S., and the registries also cover nearly 70 percent of Native Hawaiians and other Pacific Islanders.
Looking at subgroups, Sierra's catchment regions include 53 percent of Chinese, over 71 percent of Japanese and 69 percent of Filipinos in the U.S.
In computing incidents of mortality rates, obviously, we need estimates of the population at risk and these data come from the U.S. - the Decennial U.S. Census -and are delineated or given to us and are delineated by the geography at these various levels, race, Hispanic or Spanish ethnicity, sex and age group.
And, as you know, Census estimates have been shown to be underestimated for certain minority-group populations. So, in California, we actually use population counts that come to us from the Department of Finance, which takes the Census estimates and corrects them for the under count and over count and other racial, ethnic groups, and, furthermore, they provide extrapolated and interpolated intercensal estimates for certain populations, and the key word is for certain populations, and, in fact, one huge limitation for those of us who focus on Asian populations is that intercensal population estimates are not available for specific Asian subgroups, and this is a huge limitation, severely limits our ability to examine detailed trends of cancer incidents and mortality over time for subgroups.
We are currently working with a demographer, Tim Miller, at UC Berkeley, who uses an algorithm based on external sources of data, and this is similar to what the Department of Finance uses. These data include school-enrollment records, voter-registration records, birth and death certification, et cetera, and he is using this methodology to come up with intercensal population estimates for five of the largest specific Asian subgroups. So, hopefully, that work should be very valuable to us. It's been a long time in coming.
I'll next be presenting some of our work that uses cancer registry data to try to explicate patterns and incidents, treatment and survival for specific disaggregated subgroups. I know you all were talking earlier about the importance of disaggregation and that is something that we have been trying very hard to do.
So one of the advantages of the cancer registry is, as you saw, that there are relatively large numbers of specific racial, ethnic groups to enable disaggregation.
This table is from a Sierra publication called Racial Ethnic Patterns of Cancer in the United States, and I pulled out the data for breast cancer. So these are breast-cancer incidence rates for 10 racial, ethnic groups, and you can see the tremendous heterogeneity in breast-cancer rates among the Asian subgroups that are highlighted here in yellow with Hawaiians having the highest rates and exhibiting rates that are nearly four times higher than that seen for Koreans.
There is also a heterogeneity for prostate cancer in males with rates among Japanese nearly four times higher than among Koreans. So there is, indeed, differences in cancer incidence among the Asian subgroups.
The disk is doing something. So I'm kind of waiting for it to finish doing whatever it is doing.
We recently published a monograph using Sierra and international cancer registry data to compare rates of cancer among Chinese, Japanese and Filipinos who live in the U.S. with rates of the counterparts living in Asia, and, again, this was using Sierra and also international cancer registry data.
And I will show you shortly a graph that was derived from our monograph that compares breast-cancer incidence among actually five different Asian subgroups living in the U.S. and Asia, and you will see that for all of the groups that breast-cancer rates are higher among Asians living in the U.S. than among Asians living in their native countries in Asia, but what is interesting is that the degree of the difference, in fact, vary by subgroup. The rates for Filipinos who live in Manila is lower among rates of U.S. Filipinos living in the U.S., but the difference between those two groups is not nearly as dramatic as you see for other Asian groups like Japanese or Koreans.
So still waiting. Is it running off of the disk? Is that why it's going so slow?
SPEAKER: Yes.
MS. GOMEZ: Okay.
So this is the graph that compares breast cancer incidence rates among Asians living in the U.S. to Asians living in their respective Asian cities or countries in Asia.
We also used these data to compare how incidence rates of breast cancer change with age, and I am going to move on to the next graph. Is that okay?
MS. BREEN: Have you got any comparisons on rural areas?
MS. GOMEZ: In Asia?
MS. BREEN: Well, I think all those Asian B well, China, I don't know, but -
MS. GOMEZ: With the exception of Kane Wa(?) that is actually a rural, farming -
MS. BREEN: The ones you mentioned seem to be large cities.
MS. GOMEZ: Um-hum. Um-hum.
MS. BREEN: Hanoi, Manila.
MS. GOMEZ: I think that is a really good point.
One big limitation of looking - doing these types of international comparisons is limited by the virtue that not all cities have registries. For example, Manila is a big international - you know B probably fairly well acculturated country. Whereas, Kane Wa is a rural, farming community off B a small island off of Korea. So we know that there are urban/rural differences in cancer and how cancer occurs. So these differences that we see could certainly be driven by some of those, and it is really the best we can do. There are other limitations as well that we discuss at length in our monograph, such as the completeness of registration in some of these countries. We can be fairly certain that we do a pretty good job in the U.S., but we don't know about - you know - these other countries.
MR. LENGERICH: This is >88 to >92 data.
MS. GOMEZ: Right.
MR. LENGERICH: So this just represents, actually the Bay Area, correct?
MS. GOMEZ: In fact, no, this is all of Sierra and we have added on -
MR. LENGERICH: Oh, okay. Thank you.
MS. GOMEZ: - data for California. Um-hum. Yes.
And one reason that you - I mean, if you have seen data for Asian subgroups and if you have noticed, it is always limited to >88 to >92, and that is because of the limitation I mentioned earlier in our denominator data. We use 1990 Census to nominators, and to look at incidence rates using 1990 Census denominator for cases diagnosed beyond >92 really is B we just wouldn't feel comfortable with that. So, again, that speaks to the limitation in the denominator data.
We looked at rates with age, and you can see on the graph on the left for the Asian subgroups incidence rates increase dramatically with age - increasing age - whereas among Asians living in Asia, they either taper off or, for some subgroups, such as Vietnamese and Korean, drop fairly rapidly at an older age.
So cancer incidence data such as these that compare racial, ethnic groups in the U.S. or that compare migrants in the U.S. compared to those living in their homeland are valuable for us not only for public health prevention efforts that are targeted to more specific groups, but also provide clues to cancer etiology and are what we call hypothesis-generating studies that enable other epidemiologists to conduct studies to understand why exactly we are seeing these types of patterns.
Because we do collect data on our registry on treatment that are received for cancer, we are able to examine patterns of cancer care among racial, ethnic groups, and specifically to determine which groups are not receiving the appropriate standard of care.
One area of inquiry as regards Asians that we have been active in is looking at differences in treatment for breast cancer.
With the NCI's 1991 recommendation for breast-conserving surgery or BCS for early-stage cancer, the rates of BCS have been increasing over time in nearly all populations, but we have found, using our cancer-registry data, that there actually remain differences in the receipt of BCS by age, socio-economic status and by race, ethnicity, and, in particular, Asian women, various surveillance epidemiologists have found, tend to be more likely to have complete breast removal B that is, mastectomy - rather than BCS for their early-stage cancer.
Moreover, we found B I'm using our data B that there are further variations among Asian subgroups as you can see in this graph.
Up to 61 percent of Vietnamese - on the far right of the graph - women who were diagnosed with localized or in situ cancers received mastectomy in lieu of having breast conservation.
And this graph shows that there is also heterogeneity among Asian subgroups and the likelihood of not receiving radiation after BCS for localized breast cancer as per NCR recommendations.
You can see that Chinese women were more than three times - were three times more likely than non-Hispanic whites - as a reference group - to not receive - radiation, compared to 2.6 times among Japanese, and it appears from these data that Filipinos and other APIs were not much different than whites in the receipt of their radiation.
So these are just the sample studies on treatment of Asians that we are active in, and they show that Asians, in fact, do vary with respect to their treatment for cancer.
We are currently planning followup studies that will aim to explicate the various cultural demographic clinical reasons and economic reasons for choices of treatment that the women make, information - the extent of information they receive from their providers and the quality of the communication with their providers in their decision-making processes. So we are trying to get funding to follow up these observations.
Now, because we follow up our patients in our registry for vital status, we can also certainly conduct studies of survival, which we have done for - also for Asian subgroups, and here we looked at five-year survival following diagnosis of cancers that are amenable to early detection. These graphs comparing five-year survival among males diagnosed with prostate and colorectal cancer show more favorable survival among Chinese and Japanese, but relatively worse survival among Filipino males.
In this analysis we had also considered stage at diagnosis, as that is certainly an important player in one's survival after cancer diagnosis, and we basically found that these patterns persisted within stage.
For women, we found that Japanese women experience relatively favorable survival after breast cancer and that Chinese women have fared slightly worse after colorectal cancer, and, again, these patterns mostly persisted within stage of disease.
We are conducting additional studies using cancer-registry data that has been linked to Medicare data to try to uncover factors that are responsible for these patterns that we see here and focusing on the subgroups.
Kind of shifting gears a little bit, we have conducted a number of methodologic studies to document the quality of cancer registry and also hospital administrative data on race, ethnicity and place of birth.
Certainly, one universal concern regarding using race, ethnicity and research that you have all touched on in your discussion is the accuracy of the data and the potential for misclassification.
Although, self-reported data are often regarded as being the most accurate, it is important to think of self-identification of race, ethnicity as not being static, but, rather, fluid as it can change depending on one's context, and, in fact, a comparison of self-reported race, ethnicity in NHANEs with the epidemiologic followup survey found that only 58 percent of subjects self-identified the same ethnicity on both of those surveys.
And also data on - that's on race, ethnicity and that's recorded on the mission's(?) records may also be subject to misclassification.
And we did a study B in fact, this was from my dissertation, completed last year - comparing - addressing exactly this. What we did was we compared interview - race, ethnicity that was obtained upon interview - so that's self report - with race, ethnicity that is recorded in the Kaiser HMO Admissions Data Base.
We found that the sensitivities and positive predictive values for Asians that I have highlighted on the bottom there were actually quite high, but, of course, if you disaggregate, you see that there are differences. So when we consider the subgroups separately - I have to just make a side note here. An Asian, they didn't have any - the coding was not more specific than just Asian and Kaiser. They didn't have available coding for specific subgroups. So to the extent - all we could look at was the proportion that is classified by Asian - as Asian by Kaiser. So that is what those proportions at the bottom represent, and we see that the percentage that is classified as Asian by Kaiser was high among Chinese and Japanese, but lower among Filipinos at 79 percent, and also lower among other Asians at 74 percent.
The latter two columns there are the multiple race categories that we had considered. We weren't able to look at anything more specific, because of small numbers, than subject to self-identified as being of two different Asian subgroups and also of an Asian subgroup and a non-Asian subgroup, but it was, nevertheless, interesting to see how they were classified in the Kaiser database.
We did a similar analysis comparing self-reported race, ethnicity from study interviews with race, ethnicity recorded in our cancer registry, and in graphical format, I have shown the sensitivities and the positive predictive values of registry classification.
We were able to look at slightly more specific subgroups, and as with the Kaiser data, you can see there is considerable variation in accuracy of the data among the groups with higher accuracy, in general, among Chinese, Japanese, slightly lower, but yet still high - among Filipinos and Vietnamese, but pretty relatively low for Koreans and Asian Indians.
Certainly, the accuracy of cancer-registry data, at least that on race, ethnicity that comes to our registry, is determined at the level of the hospitals, because our data are abstracted from hospital records or medical records.
We did a study in 1994 in which we sent a survey out to hospital administrators of the 60 or so hospitals in our region, and we asked about their policies and practices regarding the collection of patient data on race, ethnicity and birthplace at their hospitals.
One of the questions asked, does your hospital currently collect information about a patient's race, and, overall, 85 percent said yes, they do.
We looked at these trends by hospital characteristics. There appear to be no significant differences by the bed sizes we used as a proxy for the size of the hospital. However, private hospitals were more likely than public hospitals to report collecting patient information on race, as were teaching hospitals were likely than non-teaching hospitals, and, now, we have an ongoing study to obtain a more contemporary picture of hospital practices with regards to collection of these data elements.
We are also trying to get a more thorough picture by surveying not just hospital administrators, but a variety of personnel from admissions clerks, nurses, physicians, to supervisors of medical records, departments and out-patients, et cetera.
One of the questions that we are including in our survey in this ongoing study is a question asking hospital personnel whether they collect specific information about Asian subgroups in their hospitals. So I think it will be very important, too, when these data come in.
Again, you have touched on this one issue, an assessment of race ethnicity that has been of great recent interest is that of multiple race.
Although the percentage of the population, according to the 2000 Census, that reported being of multiple races is currently relatively small. It was 4-1/2 percent in California. The number is increasing as the percentage - that's multiple race B is considerably higher among younger cohorts, and also the number of interracial marriages have been increasing.
In addition to the 2000 Census, many epidemiologic questionnaires also now allow study subjects to select more than one race, so the questions - the salient questions, I think, are should we be asking about multiple race in studies? I would think that most policymakers and researchers would answer yes, but as the previous speaker discussed, the issue then becomes how does one analyze the data, and this can be quite complex. Even if we were only to have five racial categories, there could be as many as 120 different permutations of the racial groups.
So there are various strategies that one could use to analyze the data and to basically collapse the number of groups to a more manageable number.
As you know, the U.S. Census and the NCHS have been working together to coming up with these bridging methods that will ultimately assign multiple race individuals to one group based on socio-demographic indicators.
There are also what are called minimum/maximum methods, and this is what is going to be used by the Department of Finance here in California. This method assigns a given multiple-race individual to the race that is under-represented in that individual's county. So, for example, if I was white and Chinese, if I reported that I was of white and Chinese descent, I would ultimately be assigned Chinese if Chinese was to under-represent a group in my county.
So each of these approaches to data analysis certainly are associated with their own methodologic strengths and limitations.
For us, in the cancer registry, of even more concern is that the population data that comes from the Census and the Department of Finance is inconsistent with how we collect race and ethnicity in our numerator data or the number of cancer cases, especially since most hospitals don't allow patients to identify with multiple races. So that is a big issue to us.
And we did look at this in our research from the same Kaiser study that we described earlier. We compared interview or self-reporter race, ethnicity data with Kaiser admissions data. In our interview, subjects were allowed to select more than one race, but in Kaiser only one race was allowed. So this table shows the distribution of Kaiser race by self-identify race among the 128 subjects in our study that selected more than one race.
About 12 percent or 27 I've highlighted there of the multiple-race respondents identified with an Asian subgroup - with an Asian group. This is slightly lower than that that was reported. In the 2000 Census in California about one-fourth of the multiple-race population identified with an Asian group.
And if you look closely at this table, the biggest limitation in the Kaiser race data was that most of the subjects had their Kaiser race recorded as Unknown or Missing.
In the cancer registry, we collect data on place of birth. Because of its potential utility for informing studies of migrants, particularly for Asians, we conducted a study to examine the quality of this information.
In the same 1994 survey that I alluded to, we also asked whether the hospital collects information about the patient's place of birth. Overall, 32 percent of the hospitals reported never collecting this information, but when we looked at the hospital characteristics, smaller hospitals were more likely to not collect birthplace information than larger hospitals. Public hospitals were more likely than private hospitals to never collect information, and non-teaching hospitals were more likely to not collect information than teaching hospitals. So, overall, the large, private teaching hospitals tended to do better with regards to collecting birthplace information, and, in fact, these characteristics were mostly similar to the hospital characteristics that did well on reporting data B collecting data on race, although the differences here for birthplace are certainly more striking.
One of our concerns regarding birthplace data on our registry is given that the high number of hospitals actually don't report birthplace data or don't collect birthplace data, our concern is that the more than 30 percent of the patients on our registry who lack the data might be different from those who actually have the data. So this would limit our ability actually include this information in our statistical analysis. So we looked at this.
This graph shows the percentage of patients that self-reported as being foreign born - and we stratified it by whether their birthplace information was recorded or available in our registry or not recorded.
And, indeed, we saw that, for all subgroups - except for Vietnamese, among who all were foreign born - the patients in our registry who had a recorded birthplace were more likely to be foreign born than those without recorded birthplace, suggesting a bias in the completeness of the data by birthplace.
We also compared self-reported birthplace to the birthplace that is in our cancer registry - for example, the patients - and, basically, found that sensitivity and the positive predictive values were, in fact, uniformly high for all the Asian subgroups.
So what this means is that when birthplace data are available B when they are there in our registry - they are basically - they are, in fact, quite accurate, but the problem is that the substantial portion of patients who don't have the information, in the bias nature of those people that don't have the information, so this still, nevertheless, limits our ability to use this information in our analyses.
So while we have made strides in using cancer registry and other sources of data to better understand the impact of cancer in specific Asian subgroups, we, nevertheless, constantly struggle against the limitations in the data. So how can we improve the quality of data on race, ethnicity and birthplace in speaking specifically about the cancer registry?
Since most of our data come from hospital records, we should encourage hospitals and other medical reporting facilities, such as doctors' offices. In fact, our studies have shown that doctors' offices do the worst in terms of reporting data on race, ethnicity.
Nevertheless, we should take steps to encourage them to uniformly, systematically and deliberately collect these information of all patients. We should also encourage recording of these data on birth and death certificates as they also are valuable sources of data for research on health disparities.
It's not enough to just collect that information. We learned that oftentimes, particularly in Kaiser, admissions clerks would just note the patient's race, ethnicity and write that down, and, as we all know, that can be subject to misclassification. So the data should be based on self-report.
Identification with multiple categories should be allowed, and the categories should be as specific as possible. It doesn't help us to just have one category that is Asian and we really should try to provide specific categories of Asians.
Questions should, just for comparability purposes, in general, be similar to the U.S. Census, and this was a discussion that you guys had talked about before, and I was sitting back there trying to not interrupt, but, actually, we - our organization had been very active also in Proposition 54, and it was, as a previous speaker alluded to, quite refreshing to see the medical community and researchers really mobilize themselves and put their own agendas aside to really fight against the passage of this proposition.
And I think that this issue about hospitals collecting data in their facilities is related to the proposition. Certainly, hospitals aren't in the business of conducting research and asking patients about their race, ethnicity and birthplace probably ranks low on their list of priorities, but we do know that hospital admissions data are used by researchers to identify disparities in health-services delivery and they are certainly used by the cancer registry, by our epidemiologists who conduct surveillance of cancer.
And you had asked earlier about - in the Proposition 54 effort - what was the message that was put out to people about how the actual collection of data would be impeded, and the speaker said that she didn't actually get into that, but, in fact, we did, and maybe data collection isn't sexy, but we did feel that it was important to at least let people know on a - you know B fairly basic level how exactly data on race, ethnicity, if that were to stop completely, we would effect health research work, and we used the cancer registry as an example, and what we said was that - you know - the cancer registry is mandated by law. Cancer varies, we know, a great deal by race, ethnicity. If we don't collect these data, we basically can't conduct surveillance of cancer. We can't find, for example, that certain Asian subgroups have higher rates of liver cancer, that rates of breast cancer and prostrate cancer are highest in Marin County, and we can't begin to identify groups that need further intervention, prevention and to conduct further research to understand why.
So we have also learned through our studies that hospital personnel are actually afraid. I think the barriers reside on two levels. One with the patients, that they are unwilling to give out the information and may be construed as sensitive or something else. We also found that hospital personnel are afraid of asking the questions, because they are afraid that B you know B they may face backlash from their patients if they were to ask, and, certainly, the racial privacy initiative in Prop 54 doesn't help the public perception about the importance of information - for health research.
So, as the previous speaker said, I think part of the effort really needs to be in educating the public about the importance of continuing and collect these data and to make sure that the data are of high quality, because one of the B ammunitions, if you will, that Ward Connerly and his group put forth was that why should we collect these data? They are of poor quality anyway. So I think instead of completely abandoning the effort because the quality is bad, we should really try to make the quality better.
So, in that vein, I think one strategy might be to systemize the collection of these data across hospitals, and perhaps a national task force could be - that comprises of various national health organizations, hospital representatives, researchers with the aim to formulate policies and guidelines on collection of data that can be applied to all facilities and hospitals in the U.S.
We also need to improve the quality of research among Asians by continuing to advocate for the desegregation of subgroups.
Research studies show where possible over-sample minority groups ensure adequate representation of groups to ensure high end of numbers and high end of statistical power.
Researchers should also engage community and advocacy groups in the design and conduct of their studies, and they should also make their data and results available to these groups so that their research can be translated into practice. I think that is a very important step that often researchers do not take.
Again, the questions that they ask on their surveys should be comparable to those used in the Census or the NCHS or should at least have a minimum - have the same specific elements as these questions.
And, finally, studies including Asians should incorporate measures of socio-economics, immigration and acculturation, so that, in the words of the NCI, we can fully understand the fundamental causes of cancer health disparities, including the influence of social position, economic status, cultural beliefs and practices, environmental exposures, genetics and individuals' behavior, so that we can develop effective interventions to address these disparities and really hone in on the subgroups that are experiencing the poor health.
And, finally, I wouldn't be a cancer surveillance epidemiologist if I didn't end with recommendations for improving the quality of cancer surveillance data.
As I mentioned, we feel good about the job that we do in collecting cancer-case data, but that only really comprises one part of when you look at cancer incidence or mortality rates, and, as I mentioned, our biggest limitation and surveillance of cancer mortality and incidence data trends in Asians is the lack of available sense of - the lack of availability of intercensal population estimates for specific subgroups, and the quality of doing surveillance on cancer burden in these sub-populations is predicated on the availability of these data.
Again, we need to continue to advocate for the disaggregation of subgroups in analyses of cancer-registry data, particularly, as we saw B and I showed you earlier B in SEAR(?) that the representation of these groups are actually quite substantial in the SEAR program, and the way I see it, there really almost is no excuse not to aggregate. Certainly depends on the cancer site that you are looking at, but I think we should advocate for disaggregation.
And just as with researchers in general, I think surveillance researchers should engage community and advocacy groups in the design and conduct of our studies. We should also make our results available to these groups, but, also, it is important to make them available in a language that is appropriate and applicable for a broader audience.
I think that we have made significant strides over the past few years in how we study cancer and how we study disease and health in general for Asians, and I think that it is great that there is now recognition for the importance of this aggregating the subgroups in research. There certainly is much more data that are available for us to study, to use, but I think, as we have all talked about, there is also significant room for improvement, and I feel - as a young investigator, I feel hopeful that we will continue to improve. So thank you.
DR. MAYS: Great. Thank you.
Questions? Questions at the level of the members? Participants in the audience.
MS. BREEN: Let's see. I wrote some down. Let me collect my thoughts here.
Oh, you mentioned the need for intercensal population estimates. You said that, I guess, neither the Census nor the California Department of Finance does it for Asians. What groups do they do it for currently?
MS. GOMEZ: They do it for the five broad racial OMB groups, racial, ethnic groups. They don't - they do have it for Asians. They have it for Pacific Islanders, I believe. It used to be just Asian, Pacific Islanders.
What we lack are subgroups. There are no B to our knowledge - no intercensal denominators for Asian subgroups at all out there.
MS. BREEN: This is more a substantive question, and I don't know if you have thought about it or be able B but it was striking to me that when you were looking at the relative ranking by nationality for survival it was different for men and women in terms of which nationalities did better. That was striking to me. I don't know if you had any thoughts about that.
MS. GOMEZ: We don't. We are conducting further studies. It is striking. I mean, the one cancer site we were able to compare for men and women was colorectal cancer, and we found that - you know - with men, the Filipinos did worse. The Japanese seem to do well regardless of cancer site, sex; but with females diagnosed with colorectal cancer seemed to be Chinese that did worse and it's - we don't understand why. It would certainly point to a commonly, I guess, cited reason for why cancer survival might be worse for these screenable cancers is socio-economics and lack of access to health care, but it would certainly point to other B reasons other than those, I think.
MS. BREEN: I guess one of the questions that came to my mind was whether men and women in these communities access the health-care system differently. I don't know about that, but, certainly, it might be something to look into more.
MS. GOMEZ: Some cultural research that has been done - this is slightly different B looking at breast cancer is that cultural reasons might be very important in the choices of treatment that a woman makes, for example, whether they select breast-conserving surgery or mastectomy. Breast-conserving surgery involves a course of radiation. You have to go to the hospital every day for five to six weeks, and, for many women, that is just not feasible. You have - you are obligated to your family. You have to be the provider, and that's that. So, anecdotally - and also some focus-group research has shown that those reasons are important, and we are conducting B trying to conduct studies to follow that up on a more population-based sample.
DR. MAYS: Eugene.
MR. LENGERICH: Thank you very much. A couple of questions.
One is, for clarification, when you speak about the need for disaggregation of the cancer-incidence data, I think what you are meaning is disaggregation by specific race or ethnic groups -
MS. GOMEZ: Right. Right.
MR. LENGERICH: B across geographic regions. So, for example, the individuals who are recorded - the Filipinos who are recorded in the Hawaii registry would be aggregated with the Filipinos who are recorded in the California registry.
MS. GOMEZ: Right. Much of this depends on the availability of numbers. I believe that - I mean, I would certainly think that it's - you know - aggregation for statistical power purposes is certainly legitimate, but for just doing it just because we have historically done it is, to me, not an acceptable excuse.
MR. LENGERICH: Then that leads to is it part of your research protocol to examine differences in the geography of those individual groups, too?
MS. GOMEZ: We do to the extent that our numbers allow us, and we do multi-vary analysis. We do have a little bit more power to do that. So we will always, as a rule, include their place of residence into our models.
MR. LENGERICH: Um-hum. And do you find that there are differences then?
MS. GOMEZ: It does. It does make a difference.
MR. LENGERICH: Okay.
MS. GOMEZ: There was a study by the Hawaii registry that had shown that women who were diagnosed with breast cancer living on the - I guess it's the island of Oahu, which is where the radiation facilities are - were more likely to have breast-conserving surgery, because women living on the outer islands who don't have - they have to basically - you know - take a plane or I guess they can't take a boat. Have to fly over to Oahu to get the radiation weren't doing so. They were - so they opted for complete breast removal or mastectomy. So geography certainly makes a difference.
DR. MAYS: Okay. I'm going B if there's no more questions, we are going to bring this to a close, because I am a little cognizant of the fact that we have somebody from Palau on the phone.
SPEAKER: This is the Republic of Palau.
DR. MAYS: See. (Laughter). So I want to thank you very much for your presentation, and -
SPEAKER: Excuse me, this morning. Can you hear us from Palau?
SPEAKER: Yes.
DR. MAYS: Can you -
SPEAKER: This is the Republic of Palau calling for a testimony.
SPEAKER: Say hello.
SPEAKER: Where's the phone?
DR. MAYS: The phone was over there. Okay.
Can you just make sure, in terms of B on your way out - that we have the presentation? Oh, okay. Because I thought there were some problems. It's on the disk and not on the hard drive. Yes.
Okay. Are we ready to talk to our person from Palau?
SPEAKER: Yes.
DR. MAYS: Can the person hear us?
SPEAKER: Yes, we can. Good morning.
DR. MAYS: Oh, what time is it there?
SPEAKER: It's 10 minutes to 4:00 a.m. on Saturday.
DR. MAYS: Oh, my God. You know, we are very appreciative that you have been sitting up and waiting to talk with us. I think I was told that it was in the afternoon, so that's why I said - you know - in terms of getting to you we might run over a few minutes, but I had no idea that you were in the a.m. So bless you very much for getting up so early.
We are happy that you also see your testimony as important as we do and that you have made this extra effort B this extraordinary effort, not extra, but extraordinary effort, because I don't know if any of us could have gotten up at four o'clock to talk with you at your regular time. So we really appreciate you going beyond the call of duty.
So why don't we start then, because I didn't realize what time it is. Let us let you start, so that if you do want to get back and have - you know - go to sleep, you can. (Laughter). And I hope you're doing this from home.
Agenda Item: Palau - Greg Devor
MS. TALAY: Hello. Good morning. Yes, this is Juletta Talay(?) with me is Dr. Devor(?), the Director of Hospital and Clinical Services. Dr. Quartay(?) should be here, but he was unable to come, understandably. We are several time zones away from you folks there. So we appreciate your being able to do this on the phone.
I think I'm going to just turn it to Dr. Devor. He is going to explain what is happening with our testimony.
DR. MAYS: I think it might be useful if B
DR. DEVOR: Good morning.
DR. MAYS: B we introduce each person, because I guess I didn't realize there are going to be three of you. So maybe you could introduce yourselves, all of you, and then we'll start with the testimony.
DR. DEVOR: Okay. Thank you. Yes, is this Audrey Burwell, who we're speaking to?
DR. MAYS: No, this is Vickie Mays, the Chair of the Subcommittee on Sub-Populations for the National Committee on Vital and Health Statistics. So you actually are plugged in and being heard by the entire committee -
DR. DEVOR: Great. Well, thank you.
DR. MAYS: - and you are also on the Internet.
DR. DEVOR: Thank you for this opportunity.
Did you folks receive our downloaded Power Point as instructed?
DR. MAYS: Yes.
DR. DEVOR: Good. Is it showing now?
DR. MAYS: Yes. We have both copies, and it is visually in front of us.
DR. DEVOR: Okay. Thank you.
I'm Dr. Greg Devor. I'm the Director of Hospital and Clinical Services for the Ministry of Health of the Republic of Palau, and I am with Julie Talay, who you just spoke to, and Julie is the Human Resource Development Office for the Ministry of Health.
Dr. Stevenson Quartay, who is the Director of our Bureau of Public Health, was supposed to be here, and I've got some of his slides, but I'll do my best to represent him this morning.
You should have Slide 1 that says Data Challenges in the Western Pacific, and we thank you for this opportunity to testify before you this morning, and we bring you greetings form our Minister of Health, Sandra Peerintozi(?), who is also the Vice President of the Republic of Palau.
Let me go on to the next slide, and you should have a map of the Western Pacific with the outline of the Continental United States superimposed on this area. Have you got that?
DR. MAYS: Yes.
DR. DEVOR: Good. Palau is off the coast of California. You'll see it on the superimposed outline of the United States, and Palau was part of what was formerly called the U.S. Trust Territory of the Pacific Islands and became an independent nation in 1994 and is part of what is called now the Freely-Associated States, which include the Federated States of Micronesia, which are four separate countries, really - Yap, Chuuk, Pohnpei and Kosrae - and the third member of the Freely-Associated States is the Republic of the Marshall Islands, which is somewhere around Kansas, I guess, on your map. You can see Hawaii off the coast of Maine, and another member of the U.S. Associated Pacific Islands is American Samoa, which you can see down near Florida.
Palau is a small nation, an independent nation, which has a seat on the United Nations and has a population just over 19,000 people.
Basically, I am just going to talk about some of our data needs and not go into a further description of Palau.
Can we go on to the next slide?
DR. MAYS: Yes, we're there.
DR. DEVOR: All right. These slides were composed by Steve Quartay, and, again, I apologize that he's not here.
So, at any rate, some of the problems that we have is that, as you know, we are lumped as a group into others. For example, in our Diabetes Collaborative grant with HRSA, Palauans, there is no category and we are just shown as Others, and I know that you are very familiar with this and that is one of the reasons why people like us are testifying.
Slide 4.
Data and collective needs need to accommodate population risk factors and not just individual issues. For example, non-communicable diseases. One must collect information also on behavioral risks, environmental risks, social risks and spiritual risks collaboratively. An example in Palau is the NCD Steps Program, which we follow in Palau, which has been developed by WHO.
Going on to Slide 5 -
DR. MAYS: I'm sorry. If you can hear me?
DR. DEVOR: Sure, ma'am.
DR. MAYS: - before you go on to the next slide, can you tell us what spiritual risks are?
DR. DEVOR: Well, let me turn you over to our cultural expert, Julie Talay.
MS. TALAY: In Palau, we have traditional different types of B different cultural in Palau now and it's - we are becoming more cosmopolitan as more and more people come in as foreign workers to supplement our population base, and, traditionally, we have our own way of life or you can see spiritual way of life and superimposed with the different sects or Christian movements, you know, that kind of presents ourself to different types of risks or, you know, people come in to - supposed to help or save people, but, you know, also, you present barriers, and there's more and more discussions about that, about the spirituality and health, how do we integrate things like that into the environment as we deal with NCDC and community health.
DR. MAYS: Thank you.
DR. DEVOR: Let me add a bit. Like many indigenous cultures in U.S. Mainland and Hawaii, Alaska, Palau has had a rich history of traditional medicine which has been linked with the wholeness of the person's relationship with their environment, and with the advent of Western medicine, there has naturally been a clash between Western medicine, which we all see the benefits of, but, also, issues of traditional medicine, which is really - it's almost faith-based, in a sense, to use a new term which has cropped up.
So when we are in Palau, often people will refuse Western services and go and meet with their traditional healers, and then either get better, or, if they don't get better, then will present themselves late within the Western-medicine system to be treated by Western medicine, and because often they presented themselves late or were discouraged by traditional healers to come into the system, then, of course, they come to the hospital to die, and then it's the fault of Western medicine: See, we told you it wouldn't work.
So, at any rate, there is some challenges that we have in dealing with the interface of both traditional and Western medicine.
DR. MAYS: Great. Thank you.
DR. DEVOR: Should I got on to Slide 5?
DR. MAYS: Yes, please.
DR. DEVOR: Thank you.
Data collected, we feel, must also reflect the health indicators of that ethnic group specifically. For example, a collection on medical indicators versus environmental, social and spiritual-health indicators which are part and parcel to overall health indicators for Palau - and I have a feeling I just reread that. Sorry.
Okay. Defining and refining data - this will be Slide 6 - needs of the AAPI must be supported by funding towards research in small populations, rather than having to compete with large institutions like NIH and universities, et cetera. For example, in Palau - and I'll talk more about it later B we have an AHEC, an Area Health Education Center, which is funded through HERSA and administered by the John A. Burns(?) School of Medicine of the University of Hawaii, and this is the only AHEC outside of the United States, and we have taken that AHEC - instead of applying for very difficult monies through NIH and other resources, we have taken AHEC resources and actually developed our own research agenda in Palau, which we'll talk about later, which has been designed locally and implemented locally and which will drive our health-care system with information for the next five to 10 years.
Going on to the next slide, data must allow for mapping health indicators and human-resource development, facility development, program design, service provision and evaluation of effectiveness.
For example, if suicide is one of Palau's health indicators B and it certainly is, because we are way over-represented in terms of suicides B then funding must be directed toward such indicators with measurement of effectiveness of programs, and, for example, I cite again the Palau Area Health Education Center and its community development project.
Going on to the next slide, a data on medical health, environment, socio-economic and spiritual indicators must be collated to allow ease in application to newer technology, such as utilizing GIS, Geographical Information Systems, which could be used to plot, implement and monitor community initiative.
For example, tobacco, and particularly things like Dengi(?) Fever. We had a very large outbreak two years ago which effected about 10 percent of our population in Palau, and the utilization of such technologies helps us to identify those areas of intensity with regards to the vector itself.
Now, reporting data. Palau, like other Pacific jurisdictions, is challenged with collecting quality data that is appropriate for its needs.
Currently, the Ministry of Health participates in 27 U.S. Federal programs which all require different data sets in different formats. Yearly reporting is very confusing sometimes, because different data is processed differently for different grants - and I guess I used the word different many times.
And the next slide just shows you a list of some of the Federal programs, which we are privileged to have access to, and this is under the treaty relationship between the Republic of Palau and the United States Government. Access to these domestic U.S. Federal programs was part of the treaty, and I can tell you that it is a blessing to the Republic of Palau that we have been privileged to participate in these U.S. Federal programs, but from a perspective of reporting data, not only are we considered Other with regards to many of these programs, the reporting of data is very different for many of these Federal programs.
Going on to the next. And we have a recommendation from the small country of Palau is that the U.S. Federal agencies consider banding together and harmonizing their data requirements and processes to facilitate the development of uniform data reporting from the jurisdictions throughout the Pacific and even in the Atlantic and develop standardized, user-friendly software to promote data collection, analysis and reporting.
Going on to the next slide, Slide 12, Collecting Data, the Palau AHEC, which I alluded to, is a joint John A. Burns School of Medicine, University of Auckland, Faculty of Medicine, and Fiji School of Medicine Program to provide formal post-graduate education and training for regional physicians in general practice and community health.
And for those of you B the University of Auckland is in New Zealand, I have been reminded by Ms. Talay.
And on to Slide 13.
As a part of the curriculum that was developed between the Fiji School of Medicine and the Ministry of Health, a community-development program has been initiated which is part of the formal work plan of the Ministry of Health, and resident physicians from Palau and the region, under the expert guidance of the Fiji School of Medicine, have developed a survey program, the first of its kind in Palau, and perhaps in Micronesia, a very comprehensive survey where in Palau we are now in the process of surveying 100 percent of households in Palau to gather information to help us determine the health indicators in Palau.
In the past, we have relied upon external organizations, really, to give us health information about Palau, and what we have decided with the Palau AHEC in the context of formal post-graduate training is to develop a program whereby we generate our own information with regard to health indicators. So what we have done is academize the work plan of the Ministry of Health, and it's a full diploma program in community health now with the Fiji School of Medicine, and so at the end of the day, not only will we have appropriate data, which, upon analysis, will help us develop the intervention programs that are necessary for the next five to 10 years, but, also, we will have physicians who are trained from Palau and from the region in community-health processes.
Going on to the next slide. And as I said, this is the first comprehensive study of its kind where we are trying to generate our own data and not rely upon experts from outside to assist us, and this is going to be excellent utilization data which will drive our policies for the next five to 10 years in health in the Republic of Palau with appropriate intervention.
Well, that's the end of my short testimony, and I hope that it came out clearly and that we made sense from the Western Pacific, and on behalf of Stevenson Quartay, who I'm sorry couldn't be here, and Julie Talay, we would like to thank you for this unprecedented opportunity for us to be allowed, from such a distance, to participate in this forum.
Thank you.
DR. MAYS: We want to thank you for, first of all, being up so early to share this information with us. Your presentation has been very thoughtful. It has also been very informative, and can we keep you on just a bit longer with some questions?
DR. DEVOR: Yes. Thank you.
DR. MAYS: All right. Questions?
Nancy. You might introduce yourself.
MS. BREEN: My name is Nancy Breen. I'm an economist specializing in health disparities at the National Cancer Institute, and I want to thank you very much for a very, very cogent presentation. Not only was it clear and very easy to understand, but I was impressed, to say the least, at all of the work that is being done - the data collection, the very cohesive strategies that you have developed and the way you have worked with so many different entities in your region to pull together a comprehensive program to move forward your plans in public health and to improve the health situation in Palau. So I'm in awe of what you have been able to accomplish there.
And I have to ask B well, you sort of said it, because you said you thought this was the first survey, but would you be way ahead of the game in terms of the other areas that we are talking about - perhaps not Hawaii, but other parts of Micronesia and other parts of the Pacific - in terms of developing this strategy or would this be something that we would find anywhere if we were to visit?
DR. DEVOR: Thank you for your kind comment.
I have 35 years of experience in the region, and I'm on the faculty of the John Burns School of Medicine and ran the Medical Officer Training Program in Fontay(?), which has reestablished the indigenous physician workforce throughout Micronesia, and just by - if you look at per-capita income, Palau, say, compared to the other Freely-Associated States - which, again, include the Federated States of Micronesia, if you go back to the second slide and the map of the Western Pacific - Palau's per-capita income is way above the Federated States of Micronesia and also the Republic of the Marshall Islands. So I think just by those indicators alone, Palau is a little bit ahead.
As for - I think we are a little bit more organized than our colleagues in that Palau has become a resource for the Federated States of Micronesia and also the Republic of the Marshall Islands, but we have our neighbors, Guam and Siena-my(?) where the per-capita income - per-capita income in Palau is about $7,000 to $8,000 U.S. a year, and on Guam it's $25,000 or $30,000 and Siena-my it's probably $20,000 to $25,000 somewhere in that range. So - and, also, they are formally part of the United States Government, so they have access to more U.S. Federal resources.
However, I think that I know that our friends from the Siena-my are very interested in what we are doing in terms of our data-gathering process, and particularly our educational process in trying to provide distance learning for physicians throughout the region.
If you compare B there seems to be a brick wall at the Equator, and this probably has to do with the political hegemony of the United States over the last 50 years, and there are now - with the independence of the Freely-Associated States countries, there is now better communication with the South Pacific.
For example, the SPC, which is like the South Pacific Commission, which was a mini-United Nations of countries of the Pacific, was called the South Pacific Commission, until Palau complained that, by the way, there's countries up north above the Equator. So, now, it's called the Secretariat of the Pacific Community. So it just shows that there is improving communications, but I can still say that just looking at health indicators like infant mortality and per-capita income and the amount of health-care dollars spent per capita, Palau is actually quite fortunate compared to not only its neighbors, but the other Pacific Islands down south.
So I think this was a long answer to a short question. I think we are a little bit more organized, though we don't have a lot of hubris about what we are doing.
MS. BREEN: Thank you for a very helpful response. I appreciate it. I think that is very helpful to the committee to have that context, because, frankly, this is an area we don't know a lot about, and any help that we can get in understanding the situation and what can be done to improve it or to support what you are doing, I think we are interested in knowing more about.
Another issue that you brought up was what we are calling in the United States complimentary and alternative medicine, but you called it traditional medicine, a spiritual crisis. It was referred to in a number of different ways.
It is something that, in the U.S. now, as you probably know, we are trying to come to terms with, because a lot of Asians and Pacific Islanders, a lot of Latinos, and, frankly, a lot of everybody in the United States are using these techniques, and they are not supported by Western medicine or physicians, and you have probably seen the literature showing that people tend to go and get these treatments and simply don't report them to their physicians, because they don't anticipate getting support from them about them, and so they are just sort of - people are straddling two worlds in terms of their medical care, and it's not the healthiest way to go about it.
I wondered if there were - since you are relatively fortunate, as you said, compared to your neighbors in the Pacific - if this was an area that you were working on to try to educate Western physicians about the advantages and importance of traditional care and also traditional care givers about when Western medicine might have techniques to offer that would be of use to them and their patients. Is there any activity along those lines or - you know - or plans for dealing with what you called at one point the spiritual crisis?
MS. TALAY: Actually, we have - a few years back, the whole discussion on traditional medicine, and the Bible(?) of traditional medicine in Palau began three years ago.
The first conference on traditional medicine occurred very cautiously, and just recently B in fact, just September - we have embarked on a monthly health symposium where we have, for the next 10 months, laid out topics. The first topic was globalization and health in the Pacific, and then just October, the topic was health and culture, and November, we just had health and history, and in December, we are going to have spirituality and health. This is part of the - of this effort to try to revive traditional medical practices, because we are losing them by dozens as the old people die off and somehow we know that the transformation of knowledge and skills is not being passed on because of the imposition of Western medicine and just the fact that we were colonized. That is probably not a politically correct word to use, but, now - those are some of the efforts that we are trying to do to try to bridge the gap and catch up a little bit.
MS. BREEN: Are physicians -
DR. DEVOR: Let me add - excuse me. Let me add one thing. We are also having an interesting dilemma with the issue of intellectual property rights, and the elders who are the repository of this information which has developed over - you know - the history in Palau goes back 3,000 years plus with the Austronesians(?) migrating down from Taiwan through the Philippines into Indonesia and into Palau, and the repository are our elders, but they are also afraid to give up this information, particularly to write it down, to objectify it, to put it into books, because, then, it is - you know - taken away, and there are firms from the outside that come in and are looking at different concoctions and potions of plants and et cetera for commercial purposes, and so we've got this dilemma where people are afraid to actually objectify and write down their knowledge, and, yet, when they die, they sometimes don't pass it on. So it's a terrible thing when this collective knowledge is lost, and it's being lost every day.
There has been some discussion about registering the practitioners until people know who they are and encouraging the transfer of that knowledge, you know, to the appropriate people thereafter. So it is a difficult problem.
DR. MAYS: Suzanne. Oh, I'm sorry.
MS. BREEN: Just one quick followup.
The seminar series that you were talking about, Julie, that you were having to introduce people, do the Western physicians come to those or who are those designed for and who tends to attend them?
MS. TALAY: They are designed not only for physicians and nurses, but we are actually inviting the whole community there. So each time the invitation goes out to even the judges(?) and the doctors and the lawyers and the few intellectuals in Palau, and we videotape them each time. So it's for the general public, but we make it a point to invite everyone to come, including students, and also they are videotaped for the local consumption and for archiving. So so far that has been the format.
MS. BREEN: Thank you.
DR. MAYS: Suzanne.
MS. HEURTIN-ROBERTS: This is Suzanne Heurtin-Roberts. I'm an anthropologist with the National Cancer Institute.
What are the relations between the practitioners of both systems, your traditional system and the Western medical system? Do they get along? Is there animosity? What is the sense of how they feel about each other?
MS. TALAY: It's starting to be a little bit more positive, but, in fact, this evening, I was talking to Bilow(?), who is the - of Palau, and he is very supportive, but, yet, also, what offended in the conference, when somebody said, oh, we really ought to document everything, and, you know, that is when everybody clammed up, because, you know, in Palau, knowledge is a private property.
So what Greg was saying was how do we - you know - how do we document - how do we make sure it is passed on without it ending up being taken and written up and then my knowledge is now being given up for other consumption rather than family heirloom or treasure to be passed on for economic purpose, because these people they can make money for that knowledge and practice, you know, the old ladies are still generating income for practicing their art.
MS. HEURTIN-ROBERTS: I guess what I am asking is there a way that the practitioners of both systems could work with each other?
You know, when this sort of problem arises in some settings, there has been negotiations between the medical practitioners and the traditional healers, and they actually work together to heal a single patient at the same time and coordinate their actions, so that people aren't coming too late to a Western physician, but they are still able to make - you know - get benefits from the traditional system. Is there any chance for that to happen?
MS. TALAY: In fact, it is beginning to happen. The Western-trained physicians are now starting to advocate that if you come to the out patient and you have certain things going, you tell the physician and he's about to give you something, you should feel free to say, well, for that one, I'm taking some herbs, and so, doctor, then you just give me medicine for this and this, and that discussion has already begun, and, actually, I think it is being practiced by some of the physicians.
At the same time, one of the super dispensaries in the Western side of Babumdalba(?) has been landscaped and all the traditional B many of the traditional herbal plants have been planted around the dispensaries. That is one of the efforts to bridge the gap and to be a little bit more open, as much as can be tolerated, for the two systems to work side by side. So it's still a beginning, but it's starting to happen.
MS. HEURTIN-ROBERTS: I have a couple of questions and they betray my ignorance of Palau and Micronesia.
How well can you communicate with the other states of Micronesia and how well can you travel? Is that something that is done with great difficulty and infrequency or is there some way to - for the various states to actually work together?
DR. DEVOR: Thank you.
You know, years ago, the Micronesians went on voyages of discovery and easily and not so easily populated these very isolated islands in the Western Pacific and were naturally the navigators, and I think if you are familiar with the recent history in Palau - excuse me, in Hawaii, with the Polynesian Voyaging Society, they actually had to enlist a navigator from the island group of Yap, which is just north of Palau, to enlist a navigator to teach them how to, again, sail by the stars and by the patterns of the waves.
Well, as you might expect, a lot of that has changed since, and, now, we have jet airplanes that come into these various islands, and there's - at the moment B really one airline - Continental Airline - called Air Micronesia which has been servicing the region for the last 30 to 35 years.
Travel is very expensive because there's only really one airline to most of the jurisdiction. So there's no competition, and it also effects off-island medical referral, because, as you might expect, because of economies of scale, et cetera, we can only provide a certain level of care, secondary care, to people and there comes a time - and, on a daily basis, more and more with our increasingly Westernized society - that - with the over-representation of diabetes and hypertension and strokes and cardiovascular disease and accidents - that there is the need for off-island medical referral. So it is quite expensive and quite tedious to actually travel in the Western Pacific.
Also, as I said, there is a brick wall at the Equator, and if you want to go south, you have to actually go very west or very east, so that you can go south into the South Pacific, and that is just because of the airline routes that have developed over time, and I'm sure it is based on economics, et cetera, also.
With regards to communications, we are still victims of the digital divide and we have a bandwidth problem in many of the islands, which are slowly improving over time, but we do have access to the Internet and email, and, for example, we were able to email our Power Point presentation to you last night. So it is improving and we are able to take advantage of it for not only medical - distance medical consultation, but also distance learning in health, and, you know, we are speaking from the Ministry-of-Health perspective.
MS. HEURTIN-ROBERTS: Okay. Thank you.
MS. BURWELL: Hi. This is Audrey Burwell. I'm very, very pleased that we were able to arrange this for your participation, and on behalf of Dr. Stinson(?) of the Office of Minority Health, we are just reiterating our pleasure at having you here.
One of the questions I have is you mentioned all of the block grants that Palau receives, and I'm wondering, in addition, do you receive some support from non-governmental organizations that impose another type of reporting requirement and would it be useful, do you think, for us to consider harmonizing the reporting requirements for both entities?
MS. TALAY: Yes, we do get support from the Pacific community, and - as well as the world(?) organization. We are very much a part of that, and so reporting to those regional organizations are just as difficult, and we do it by disease. So you can see as well the fact that we are an independent nation now and we are a member of the UN, every time Palau signs a treaty, that comes with all the administrative requirements which requires reporting every year.
For example, convention of the rights of a child, all the conventions, all the international treaties, once we signed that, another one imposed and we have to do it and it - on the health infrastructure as well.
DR. DEVOR: Audrey, a few years ago, there was a cholera epidemic in Chuck, which is in the Federated States of Micronesia, and teams from Center for Disease Control came in and a team from WHO came in, and they proceeded to scratch each other's eyes out with their difference processes. It was actually quite embarrassing. Now, that was actually quite a while ago.
What I have noticed, though, over the last decade is international organizations, such as WHO, working much closer to their colleagues at CDC, and, in fact, CDC people have been detailed regionally to WHO to assist them. So I think, and there is B their organizations now have a better understanding and respect for each other, and I think that your idea of including them in this harmonization process for the utilization of data is excellent.
One of the things that WHO has done with participation of CDC in individuals and the Secretariat to the Pacific Community is to set up a Pac Net(?), which is part of the Pacific Health Surveillance and Information System, and which is email based, and it is set up to alert the various islands with regards to infectious disease outbreaks.
For example, it is important for us to know that there - in Wallison Petuna(?), in the South Pacific, that there is a dengi outbreak, because we have people from Palau who go to cultural events in Wallison Petuna and then return to Palau, and that is how dengi moves around the Pacific by jet, and it walks off an airplane from an infected person, and, you know, the local mosquito in vector picks it up and then, within a few months, you have an epidemic.
So the climate is much better now than it was, and positive, and I think your suggestion about including the donor agencies as in this formitization(?) process would be excellent.
DR. MAYS: Thank you.
Edna.
MS. PAISANO: I'm Edna Paisano, and I work at Indian Health Service. I have two or three questions.
Earlier, had mentioned the population of Palau is 19,000 plus, and you also mentioned that you had a lot of foreigners coming in to Palau for work, and I was wondering, you know, the proportion, I guess, of the foreigners that have immigrated into Palau, what is the proportion of the - I guess - the 19,000, and, really, how long do they stay at Palau? Is it like just for a few weeks and months or is it years?
MS. TALAY: I think at the moment we can safely say that maybe we have 25 to 28 percent of the population in Palau are foreign workers. We have laborers and professional people from Asia, Japan and the United States to help build up our community and there are regulations about terms for people to stay, but I think this trend will continue to be with us, and probably that percentage will increase, because we need to develop our community, and there is only a handful of Palauen people. So we certainly need outsiders to help us.
And along with that, they bring their own health problems. A very good example, we were excited in the >80s that we thought we might get rid of tuberculosis, but, then, it began to increase, because it was being imported from the Philippines, and then - suddenly had - we now have more TB on the island, and we are spreading it among ourselves, too, because of that, and that is something that we are going to live with foreign people for a long time, because we are such a small community. We need help from other people in the region.
DR. DEVOR: Let me add, our community development project is also interviewing 100 percent of the households in Palau, which includes also the barracks of foreign workers, and it is really opening our eyes to their local health needs, particularly the environment around the barracks, the number of - the amount of garbage, the rats, you know, the issues of vector control, but also their individual health need, and because of the Constitution of Palau, Palauens enjoy excellent access to primary health care at a reduced cost, but it's a little bit difficult for foreign workers, because they actually have to pay some more, and sometimes a visit to the emergency room is - costs about a month's worth of wages for some of the foreign workers. So they understandably, will present late, and as a pediatrician, what I have noted is that in some of the expatriates that are here, particularly amongst the foreign workers who are not paid very well, comparatively, many pregnant women will often delay coming to the hospital when they are in labor because - you know - it is expensive at the hospital, and sometimes there are disasters - obstetric disasters related to this delay in seeking care. So there are some disparities which the Ministry of Health is trying to address both on compassion and human-rights, you know, matters, and also, I think, since we are a signer of the convention on the rights of the child, we need to make sure that all our children, whether they are expatriates or local children, have adequate and equal access to health care.
MS. PAISANO: And then my followup question is since the - I guess - you had said it was like around 38 percent, then - and you also answered one of my questions that they are included in your survey, along with that, then, do you collect data on race and ethnicity, and, also, for language, do you have to translate materials or use interpreters?
MS. TALAY: Collecting data, yes. We collect data for the indigenous people and I think we are now consciously not lumping Pacific Islanders and Asians. We are putting Koreans, Japanese and Micronesians - and all that. So we do that.
In sense of language, I think the first really challenge when we have SARS. That's when we immediately went into that process, and that is probably the first time we have consciously translated the materials very quickly in several languages, and I think that now has set the tone for us to continue, because we are now more cosmopolitan. There's more and more people here who speak language other than English and other than Palauen. So we now have to consciously do translations of materials.
MS. PAISANO: Thank you.
DR. MAYS: Okay. Virginia.
MS. CAIN: Thank you.
This is Virginia Cain. I'm from the National Institutes of Health.
Just as a way of giving a little background to help us understand the situation in Palau, could you tell me what, say, your major causes of morbidity and mortality are? What do you regard as the major health problems in Palau?
DR. DEVOR: Thank you.
In 1998, the Institute of Medicine had a publication which basically reviewed again, on a formal basis, the health status indicators and level of services for the Pacific jurisdiction, and I think it is still an excellent document and I actually tried to send a picture of it with this presentation, but it ate up so much bandwidth that, actually, I couldn't send any pictures.
Our health indicators B Palau went through a transition mortality maybe 25 to 30 years ago, where infectious diseases were the leading cause of death, and as you might expect, the various - different Pacific jurisdictions are at different times going through their transition mortality process, and it is often related to per-capita income and some other issues that impact favorably, and sometimes adversely, on health.
However, our health indicators now, in terms of morbidity and mortality, are very similar to that of the United States, and with the Westernization and the change in - and departure from the local diet, cardiovascular disease, diabetes, hypertension, stroke, cancer and accidents are at the top of the list, and, for example, in the first year of life, we have about 300 deliveries a year and our infant-mortality rate jumps dramatically, primarily because it is an issue of numerators over a denominator, and if we have one extra death in a year, it doubles our infant-mortality rate.
So, often, we are ten per 1,000 live births per year, but if we have one extra one, say, an unfortunate event, then our infant-mortality rate jumps to 20, and then someone who is not familiar with the map would say, well, what is going on in Palau? How come they are going backwards? We're sending all this MCH Block-Grant money to decrease the infant mortality, and, now, you have doubled your infant mortality. So it's a difficulty.
But, at any rate, the leading cause of death is still prematurity and respiratory disease, in the first year of life.
Beyond that, though, between age one and 24, it is accidents, which are the leading cause of admissions and death in Palau in children, and accidents was the leading cause of adults, until most recently, but then it was eclipsed by, as you might expect, cardiovascular disease.
So, now, cardiovascular disease, and particularly diabetes, are over represented with a vengeance.
In one of the jurisdictions, the Marshall Islands, up to 50 percent of 30-year-olds either have frank diabetes or diabetes trait and rival, say, the Pina(?) Indians in terms of their over representation with regards to diabetes.
So but we still have infectious diseases like dengi and tuberculous and Hepatitis B. Hepatitis B carrier rate in Palau is 20 percent among adults, and if you look at the adult deaths, the most common infectious disease death in Palau is related to the effects of Hepatitis B, whether it be from chronic liver disease or hepatoma, and, then, I might add as a footnote, fortunately, we have universal immunization since 1990 of all newborns and school children, and we hope that the carrier rates of Hepatitis B become a historical footnote in Palau within, you know, generations to come.
So we have a double-edged sword of not only being over represented in non-communicable diseases, but we still have the problem - the lingering problem - of significant infectious diseases, and, now, we are caught up in the emerging diseases, such as dengi, a slowly-increasing HIV threat, and then we went through a terrible period of dealing with the SARS threat, because we have direct flights from Taiwan, and we actually had to shut down the flights from Taiwan as a temporary measure, so that we could get our act together, and, you know, we are a very small nation with - for example, we had no isolation room. We have one national respirator. This is the kind of - you know - level that we are dealing with, and for us to deal with SARS and the community hysteria, because everybody is watching CNN and watching the daily count - so the community was besides itself, and we were attempting to deal with this issue, but to make a long story short, fortunately, we didn't have any cases, and it was more from luck than anything else.
So does that help give you a better picture of Palau?
MS. CAIN: Yes, it does, quite a bit.
One followup question, I'm wondering what the birth rate is in Palau, and is the population aging and, therefore, you are seeing more diseases of older people?
DR. DEVOR: Absolutely, and the birth rate has decreased over time. In fact, we have been very successful in our family planning. In fact, too successful, and there is some talk now that our birth rates are getting so low that we are not going to be adequate B we will not be able to adequately support our aging population.
And the other fear is is that with the increasing number of expatriates who are - many of whom are consciously trying to become pregnant and have babies in Palau, so that they can become citizens of Palau, and, also, they think that Palau is a stepping stone to the United States. So there are some challenges there, but our birth rate has definitely been dropping over time.
MS. CAIN: Thank you. That is very helpful.
DR. MAYS: Okay. Do we have any questions of anyone in the audience? Members?
I want to thank you. This has been very informative for us. This was an unprecedented opportunity also to be able to learn more so that we can educate ourselves and try and be more helpful. So we appreciate, first of all, the effort that you put into your presentation, shipping it to us, and also your being up. I don't know if you've had sleep yet, since you said you shipped your presentation last night, and it is very early in the morning. So we really do appreciate the time that you have taken and that you have shared this with us and that you extended this invitation to include more than our - you know - the person that we extended it to. So we appreciate having all of you as participants.
We will take the information that we have gotten from you and include it into our thinking about ways in which that we might be able to respond to some of the issues that you have put on the table for us to consider. It really broadened our perspective in thinking about these issues, and I think it is helpful, not just for you, but it is helpful as we work in terms of other populations, too. So, please, you have been helpful to us in many ways. So let us thank you very much for your participation.
MS. TALAY: On behalf of our Minister, we thank you for allowing us to be able to participate in this manner. We are very fortunate that it was able to work out, and I am glad that it happened, and, also, it shows us how we can really utilize technology to help us. This is going to be how we should participate, because we have so limited resources and, oftentimes, this helps when you cannot fly to another place. If ever - it's through your understanding and openness that we were able to do this, and we thank you very much, and we are looking forward to receiving the proceedings of the hearings, and, hopefully, we'll meet up in another meeting in the future.
Thank you very much.
DR. MAYS: We also should remember that part of the thank you to this goes to Dr. Stinson, and particularly to Audrey Burwell, who worked to make this happen. So that was - it was one of those partnerships. So we also want to acknowledge Dr. Stinson and the work of Audrey Burwell in making sure that this could happen. So it's - you know, the National Committee on Vital and Health Statistics thanks both sides in terms of making this happen.
DR. DEVOR: Thank you, Audrey.
MS. BURWELL: You're welcome.
DR. MAYS: And we'll be in touch.
Okay. All right. Thank you very much.
And what we are going to do at this point - as you can tell, in terms of our schedule, we still have a couple of presentations. Our presenters, who are from Hawaii, are actually with us a bit. So part of what I think would probably make sense at this point - because I think their presentations kind of go together - is that we are going to break for lunch now, and what that will do is also allow those of you who still have to check out and things like that to be able to do that, and so let me see exactly what time it is here.
Okay. Why don't we reconvene at one o'clock. That give you enough time to get lunch and check out, and our presenters have agreed that they should be able to come back and join us at one, so - okay.
Thank you very much everybody.
(11:51 a.m.)
DR. MAYS: Good afternoon. We are going to resume the hearing by the National Committee on Vital and Health Statistics, Subcommittee on Populations, and in terms of our hearing on Health Data Needs for Asian, Native Hawaiians and other Pacific Islander populations, this afternoon, we have two speakers, and then the committee will adjourn to B no, I'm sorry. We won't adjourn. The committee will move to deliberation that will include some of the issues in terms of the hearing that we had as well as some of the other committee business, and we will adjourn at 3:30.
All right. For this afternoon, our two speakers B if you want to join us, actually, at the podium over here.
We are going to start with Catherine Sorenson, who is from the Department of Health in Hawaii. We may have started by introducing her before, but we really are getting ready to get started now, and then, later, she will be followed by Carol Murry, who is with the University of Hawaii at Manoa.
Dr. Sorenson, welcome.
Agenda Item: Hawaii- Catherine Sorenson
DR. SORENSON: Thank you very much.
On behalf of Dr. Chiomi Fukino(?), Director of the Department of Health, we want to thank the subcommittee for the opportunity to participate in the hearings and to present information regarding some of the both unique and shared challenges Hawaii is addressing concerning the collection and use of race and ethnicity data, which is used to reduce and eliminate health disparities.
Health data and surveillance systems provide much needed information on illness, disability and death. To be most useful, these data must be accessible, accurate and timely. The data must also be conformed or standardized.
In preparing for this presentation, a number of us looked at multiple Websites, searching to find some examples of data sets to compare Hawaii to national data.
Seven national data sets, including both government and private agencies, we found, were not using the 1997 OMB recommended race categories. What we found were variations of race reporting B Black, White and Other. White, Black, Hispanic, Other and Multi-Racial, and so forth.
If Asian and Pacific Island group data were provided, it was often grouped into a single category.
Healthy People 2010 Initiative calls for increasing the quality and years of healthy life and eliminating health disparities.
Hawaii data evidenced the fact that there are disparities in health by ethnicity, as well as other population variables.
As an example, data from our behavioral-risk-factor survey B 2001 B the Hawaii prevalence rate for obesity is 17.6. When this is broken out by ethnicity, the picture becomes a little more clear. Among White, it is approximately 16. Hawaiian, 35. Filipino about 15. Japanese 11, and under Other, about 20. Now, Other, interestingly, includes both Pacific Islanders, which we would say Samoan and Tongan, which are generally a little heavier in stature, and it also includes the populations of Korean, Vietnamese and what not, and so those are generally a little more slightly-built. So, right away, your data has been brought down into kind of an average.
Standardizing public health data is, in essence, creating a controlled vocabulary that is unambiguous, sharable and can be aggregated that facilitates and encourages the quality, effectiveness and efficiency of public-health surveillance, providing a public-health service and public health research, resulting in more accurate and complete communication of needed data.
Ethnicity is one of the most widely collected data variables among the Hawaii Department of Health programs. The majority of the problem is that the Department of Health does not currently employ a standardized method to define, collect or report race and ethnicity data.
This first handout that I have has Appendix 1 on it, front and back, presents approximately 100 separate race and ethnic categories taken from just 11 Department of Health data sets.
The handout shows such inconsistencies as spelling. For example, we have both - some programs are using Palauen. Others are collecting by Belauan(?), the more indigenous form.
Inconsistent combining of groups. Some may collect by just Samoan. Others will collect by Samoan/Tongan.
And formatting differences, where, again, they may be American Indian/Alaska Native, and others, American Indian or Alaska Native.
These data sets also demonstrate the use of nondescript or general categories that seem to go on ad nauseam from Other Asian, Mixed Asian, Asian, Melanesian Unspecified, South Asian Unspecified, Other Micronesian, Polynesian Unspecified, et cetera.
The disparity across the descriptors in collecting practices are largely based on past practices and are often linked to funding-agency guidelines, including Federal reporting requirements.
While many Department of Health Programs collect ethnic-specific data, the data are frequently only reported at an aggregate level. The lack of data conformity results in lost opportunities to utilize the data.
An important goal is to have in processes whereby - ethnic data are conformed or standardized in terms of how they are defined, collected and aggregated, thus better ensuring the accuracy and usefulness of the information.
One of the most problematic issues is the use or the collecting and then self describing of multi-race and multi-ethnic.
There are no standard business rules for aggregating and handling multi-race and multi-ethnic information at the Department of Health. The only standard exists in our Office of Health Status Monitoring, which has statutory authority and responsibility to collect and report birth and death events.
The decision rules established by the Department of Health were done in the 1940s to use to assign infant race and ethnicity as reported by a parent or parents. Infant ethnicity is derived from the ethnicity of the father. If that is unknown or not reported, then the mother's ethnicity is used.
The decision rules allow parents to report multiple ethnicities on the birth certificate. However, only one is captured electronically.
The following rules apply: If more than one ethnicity is listed, if any Hawaiian is one of the multiple ethnicities listed, Part Hawaiian is coded. If non-Caucasian ethnicity is listed with Caucasian, the non-Caucasian ethnicity is coded. If there is more than one non-Caucasian ethnicity, the first one listed is coded, and if there are more than one Caucasian ethnicity listed, the first one, again, is noted, is coded.
A few programs use these rules. Some have their own set of rules.
Death certificates, of course, is much more problematic, because it is often based on observation, except for infant mortality with the actual - race or ethnicity is taken from the parent.
Mixed-race data. The U.S. Mainland has three primary race or ethnic groups B Black, White and Hispanic. Similarly, let's say, for example, in the Pacific Islands, Fiji has two B Fijians, 51 percent, and Indians at 45 percent.
Hawaii, on the other hand, has no major ethnic group. This is a result of different waves of immigration beginning in the 1850s with Chinese laborers who came to work in the sugar industry. It was followed by Portugese, Germans, Japanese and Puerto Rican immigrants who came more in the latter part of the 19th Century. Filipinos and Koreans were the last significant wave of immigrants arriving around 1900.
The rate of intermarriage over the last 200 years has resulted in a large percent of Hawaii births being multi-race and mixed ethnics. Collecting and reporting this data has long been an issue in Hawaii.
In 1995, of approximately 15,000 births, 58 percent reported mixed ethnicity. In 2000, the percent jumped to 61 percent.
Despite having a large population reporting multiple ethnicities, technical and programmatic issues preclude many divisions in the Department of Health from reporting this information, even though it is collected.
Programs that do attempt to report their multi-race or mixed ethnic data use an assortment of methodologies, including assigning a person to a single race, using the OMB race categories, requiring or forcing individuals to self select to a single race and ethnicity or assigning respondents to a single race group using a set of program-specific guidelines.
There are even a few cases where persons are assigned based on observation and/or the derivation of the person's last name.
Less frequently collected and used is the issue of language, both the ability to speak, to comprehend and to read. Based on the 2000 U.S. Census, persons five years and older in Hawaii, with a population of 1.1 million, 267,000 speak Asian or Pacific languages. The dominant second languages spoken in Hawaii are other Pacific Islanders, which would include Marshellese, Samoan and to a lesser degree, Palauen, Chuukese, Yapese, Pohnpeian and Kosraen. In the Filipino dialects, it is Tagalug(?). Of course, there is Japanese, Chinese and we have Spanish and Korean.
Of this 267,000, about half speak English less than very well. This, we feel, is reflective of a mix of both older persons who never had the chance to learn English, didn't really have the need to learn or who are not comfortable in English, and then the newly-arrived immigrants.
While race and ethnicity are frequently collected, collecting on language preference, comprehension or first language is less requested. Of these 11 data sets, we have here approximately a third ask a language question, and a different third ask about immigrant status or country of birth, length of living in the United States. Only the TB data collects both of those issues.
Concerning the ability to read English, all of the population based in other program level data collection instruments are written in English. Clients who either do not speak English or have a limited comprehension cannot adequately respond if they are simply handed a form.
Some of the barriers to the lack of standards in determining and defining aggregating and collecting and reporting this information is our lack of denominators for the discrete groups in Asian, Pacific Islander populations.
Population size, particularly for specific Pacific Island populations is impacted in terms of the ability to report rates. We just don't have the denominator. In general, the Department of Health is left to make use of counts.
What we are doing to correct some of these problems is being addressed through the development of our Hawaii Health Data Warehouse. This warehouse is a means to coordinate resources across administrations and divisions, to ensure consistency in the public-health data with national recommendations and to increase public access to health data. Foremost in the design vision was integrating data from disparate data sets to enrich the information.
In response to these problems, the Department of Health created a model, and that is that second form. That's the appendix.
Two, that allows programs to continue to utilize current data collection processes, but also allows the programs to aggregate towards meaningful and consistent data.
The model provides for the continued collection of program-level data, and that is what you see at the far right side under Discrete Ethnic Groups. What these represent are what is currently collected in those 11 data sets, verbatim. I mean, we just pulled it directly off that.
And then it identifies a process whereby the ethnicity data can be clustered up using a set of standards, and you can see how it roles up then from these very discrete ethnic groups to a middle level called aggregated. So we would know, under - beginning at the far left side, you have the OMB race categories. This, then, disaggregates down to these other ethnic groups. So under Asian, the Japanese, Filipino and Chinese populations are of most interest to Hawaii, because they are just a larger population.
And then we would have a fourth category called Asian Other, and anybody looking at that would then know that all of these other groups that are collected fall under that. You are not going to find anybody who self-reports Filipino, for example, to be in under Other Asian, and follows then with Native Hawaiian and then Other Pacific Islanders, with other Pacific Islanders broken out by Polynesian and Micronesian and Melanesian, and then each of the discrete groups within each of those.
This model is a living and dynamic model. As new information becomes available or data needs change, the model will be revised. Because there is no Department of Health requirement that data elements be standardized, adoption and application of the model will be implemented through consensus. Change will come about as Department of Health service providers are asked and required to adopt these categories and means to aggregate.
And over the next six months, we are going to be addressing twelve areas. We are going to continue to collect race and ethnicity data as long as the differences in health outcomes are a reality. We are going to move to view race and ethnic data as clues to be mined and not ends in themselves. We are going to consider using a scale that measures factors - such as income, residency, education, nativity, language proficiency, et cetera - in conjunction with race and ethnicity, and we are going to look to the University of Hawaii and other groups to perhaps look at developing scales that might go into suggesting - cultural scales type of thing, and - much of what has already been talked about here.
We are working very hard at the Department of Health to be precise when we use the terms race and ethnicity and to not view them synonymously.
We are going to be reviewing the current ethnic categories and their usefulness in generating information for programs.
We will be reviewing the mixed-ethnicity data-collection methods and definitions, as they are measured across programs.
We are going to get rid of these vague and imprecise descriptors, as best we can and get people to try to move them into real categories.
We are going to move to standardize the spelling and the presentation. So you'll notice, if you look back at that chart, Ponapayen(?) is spelled two different ways, and let's see if we can move with a consensus to pick one.
And we are going to standardize rules for handling unknowns - true unknowns and unspecifieds.
And we thank you again for the opportunity to present what is happening in Hawaii.
DR. MAYS: Great. Thank you.
Dr. Murry, come up and then what we'll do is take questions. Since they are both on Hawaii, we'll take questions together after the second presentation.
DR. MURRY: I ask my - (inaudible) - to join me, because I think -
DR. MAYS: Okay.
DR. MURRY: I know it will be -
DR. MAYS: Can I ask you to introduce them?
DR. MURRY: I will.
DR. MAYS: Thank you.
Welcome to all of you.
Do they have mikes? Okay. Thank you.
DR. MURRY: Gerald Ohta with the Department of Health and Hardy Spoehr, Papaolalokahi(?) -
DR. MAYS: I was going to acknowledge you. So she has done so. Thank you. Because the report that we have is written by you. Thank you.
Agenda Item: Qualitative Data Issues for Native Hawaiians and American Samoans - Carol Murry
DR. MURRY: Now, I have to remember how to B I have way too much information on Power Points, and what I'll try to do is go through it more quickly, so that you'll have some time to get testimony from all three.
Just to introduce myself, I am currently working with the University of Hawaii, and we have been working on a HERSA State Planning Grant on an insurance. So I am going to use that as an example and talk a little bit about that, but, in addition, in my background, I have worked in Bangladesh, Thailand, Swaziland, Buton and about - over a period of seven years - in the outer islands of Ponape, which were experiencing epidemic leprosy at the time that I was there. So we'll talk a little bit.
But I think the unique qualification that I bring to this group is that I have a granddaughter who encompasses the entire spectrum of your purvey that she is Vietnamese, Native Hawaiian, American Samoan and Caucasian or Howli(?) and so she is really your whole group in one person.
I'll use the research that we have done with the uninsured just as an example, talk a little bit about some things that we have discussed as future directions, because I think they address some of the things that you had asked in your testimony, and then a different way of looking at some of the questions that you posed in the request.
Briefly, we have been doing research for the reason of policy development in covering the uninsured in Hawaii, and it included both quantitative research and qualitative research, and I am going to speak about the qualitative research, which is the part that I worked on, was multi-professional. We have economists, political science, anthropology, public health and sociology involved with the researchers, and we are working with community groups who include representatives of the policymakers, state workers, labor, the Chamber of Commerce, business owners. We have a broad spectrum of people that have been working on the issues.
The qualitative research involved long interviews, usually about 45 minutes, with people who are uninsured and providers throughout Hawaii.
I just put something about the methodology, but - this is where we interviewed, and one of the things that I would point out in data collection in Hawaii and in the Pacific Islands, some of - the one that I can talk about is in Ponpey - requires a lot of travel. In Hawaii, we go between islands by plane, so it adds cost and it adds time to any kind of work that we do. In Ponape, when I was working with the people of Kipingamerange(?) and Pinalap(?) mostly, that required field trips that happened once a month. So one of the trips would usually take about four or five days, depending on what happened during the trip, and the other one, a little bit less.
We interviewed a broad spectrum of provider locations - caravan sites on the beach, youth outreach program in Waikiki, in our hospitals, community health centers, social-service organizations, and we interviewed a broad spectrum of provider roles, including Native Hawaiian healers, to get the information.
Among the over 200 people who are uninsured and over 50 providers that we talked to, I found that there were 60 Native Hawaiian, part-Native Hawaiian uninsured and 24 Asian, Pacific Islander immigrants and 10 Native Hawaiian healers. So what I did was I took that data separately and thought that some of the information would be useful to you.
The policy groups that we had grouped our information in are uncovered workers, children and families, low-income adults, compact issues and safety net.
This is a quote from one of our Native Hawaiian interviewees. The slide presents things that were told to us by providers that the poor-health indicators, that Papaolalokahi has done a very good job to document, speak for themselves. The native Hawaiians do have very poor health indicators right now.
The people on Kauai that we talked to were dealing with people from Niehow(?), who may not speak English and could not qualify for Quest, which is our Medicaid Managed Care, because they didn't have the documentation that was needed.
We found that the Papaolalokahi health B Native Hawaiian health organizations were doing an excellent job of assisting people with getting through the system in ways that other organizations were not able to do as well.
The providers said that access to land and water is an issue that impacts health of Native Hawaiians, must be considered, that spirituality is important and that loss of cultural identity is a risk factor.
The quote from the gentleman is someone with diabetes, who doesn't have insurance, can't get through the system, and he was in that waiting period to be receiving disability benefits, and so it looked as if he was probably going to lose his leg, and this is a case where if he had been getting the kind of care that he needed that wouldn't have happened.
Among the Pacific Island immigrants that we talked to, the issues were the same, but more severe. They really lacked information about what they were eligible for, about how the health system worked. There were some who didn't speak English that cultural values were different - for instance, the definition of family - that poverty was a clear issue, that people were afraid of if they said anything at all to anybody that they might be sent away, and that their expectations of a health-care system were based on the system that we don't have, that you would be assuming that you would receive care.
When I thought about your discussion yesterday, one of the things that I thought might be helpful for some of the questions that came up were to look at the issue from the other end. The real purpose of the committee is to decrease health disparities. So I know that you know this. So I apologize for restating the obvious, but that looking at some of the questions about collecting data from the perspective of what you would need to reduce disparities is a good way to look at it, that that means that these questions that come up about numbers being too small, if you don't collect data on those small population subsets, then health issues aren't going to - those disparities aren't ever going to be discerned, and - if those subset populations aren't identified as such.
When I was doing my work in Micronesia, most of what - one of the populations I worked with is the people from Kipingamerange, and, at that time, there were 1,100 people and we could find all of them. They had the highest incidence of leprosy in the world, because it was a virgin-soil epidemic, and if there wasn't the kind of data collection, that wouldn't have been discerned, and it could have had public-health significance. So the numbers don't necessarily - that is not a good way to figure out whether something should be collected or not.
And with my family background, I would have to advocate for collecting data on mixed populations. My other grandchildren, I have Thai, Italian, Puerto Rican grand kids, too. Their risk factors are mixed in relation to their heritage, and some of that is a lot more complicated.
The other thing that I wanted to be sure to mention, I think it is important to include qualitative data. It tends to be marginalized data, but unless you do some kind of qualitative data collection, it is hard for you to understand the kinds of issues that you need to develop programs that can address health disparities. Just knowing that a certain population has such-and-such a problem in this numbers doesn't give you the information that you need to know how to change that.
In the work that we did, it was important to know why people weren't getting covered with insurance, and how they saw the problem, what they thought they needed, how their life was going to change, and what was the cost of not having insurance coverage.
I think these are things that have - you have heard before, that the data collection, we need to have multiple translations. In Hawaii, we used 15 different languages. We had not planned for translation. It didn't B you know B occur to us in our hurried grant writing, and, later, we realized that we had to do that, and - in order to get good information on some of the immigrant populations. We didn't cover everybody, but it took this many languages.
I would agree with the ethnic classification being dependent on the purpose of the research and saving the detail, as the Department of Health is doing. You can always aggregate data for a certain purpose, but if you don't get the detail to begin with, then you have lost the opportunity to learn something about the sub-populations.
These kinds of things cost money. The translators, the time to do qualitative data, the travel to include - in Hawaii, we say neighbor islands. In Ponape, it's outer-island populations. Their health situation is dramatically different from that in Hawaii, on Oahu or on Ponape. Even people who are insured in Hawaii have problems with access if they live away from Ohau.
Pacific Islander, Asian Pacific Islander don't really tell you anything if you are trying to address a disparity. You have to have more detail than that.
I think that Catherine just talked to you about the issues of Native Hawaiian and part-Native Hawaiian reporting, because there are issues of entitlement in Hawaii that's a different kind of B we don't get the detail in the other parts of the population that we tend to in Native Hawaiian reporting.
Barriers, you know, many time infrastructure, that is a big issue, and it is one that has to take a long-term solution from the bottom up. There have to be good research training and it has to involve people of the communities that are experiencing the health disparities.
I ran a Kellogg-funded academic community partnership organization which in Hawaii was called Kaola Ohoae(?) and we got together across the seven Kellogg-funded academic-community partnerships to work on some research issues and developed some guidelines for community-partnership research that were taken from guidelines that were developed in Hawaii in Yanai(?), one of our Native Hawaiian communities, that the community that is being researched be involved from the beginning, that they be at the table to design the research, to B the values that go into the design of the questions and that they be trained as researchers as well, and that the data that comes out be in a language that can be understood and that it be accessible, like in public libraries.
Privacy and confidentiality. I think you have talked about even though we used pseudonyms, we never collected the actual names of people. I discovered that one of our research assistants was going to report out information that included data on someone who lived on Molokai - like age, sex, the problem that they were experiencing, and the nickname they had chosen.
Now, it is quite probable that somebody from Molokai that read that could have known who that is. So this really is an issue with small populations.
I think we have talked about these things. There are partnership models that I think are good. I think it is good to build on existing partnership. Federal funding often requires formation of new partnerships. So you break off something that got started and put it together again a different way. I think trying to do long-term funding makes more sense.
Accountability by including community or the populations of interest in the design and the evaluation.
That the community be involved in these discussions of safety and quality.
And the difference that it can it make is that these disparities really haven't changed much over time. Issues related to data haven't changed much over time, and the ultimate cost is that people really are suffering.
There are people in Hawaii without insurance who are living and experiencing suffering like you would think we were in a Third World country. People are pulling their teeth out with pliers, sewing up cuts, not getting care. You know, despite a safety net, this kind of thing still goes on.
And the health disparities don't just effect the people that are experiencing them. You can see these being handed down from one generation to the next, and who pays? Of course, we all do.
So I wanted to ask both Hardy and Gerald to add to this. I know that Hardy had some very specific recommendations that I wanted to be sure had a chance to talk about.
DR. MAYS: Maybe what we can do is have both of you introduce yourselves and then make sure, in terms of your comments, that we can get comments from you both, but that we also have some time for questions and answers, because we actually are ending at 3:30 today.
DR. MURRY: Okay.
DR. MAYS: - and we are going to do a couple of other things. So if we could have some brief comments, we welcome them.
MR. OHTA: I'm Gerald Ohta. I'm the Affirmative Action Officer for the Healthy - and one of the things that I am a very glad at - because I'm a one-person office - I was a one-person office until the last couple of years - is that the past administration, just prior to the one we now have in Hawaii, recognized the fact that we really needed to attend to the data issues and the informatics(?) issues, and, in fact, hired Ed Prince and Catherine Sorenson to deal with some of these issues as a lead, and what that has done is, I think, as you can see from what Catherine has presented, it really brought to the fore some of these issues that we have been seeing anecdotally for a long time and we have tried to approach.
One of the things I wanted to take from what Dr. Devor said on Palau is that there really is a need to harmonize the Federal-agency approaches to us and what we are required to do, because for many of the programs that I have been collecting data, what they have always told us is, well, we are required to get these categories, because that is what the Feds ask us to do, and so they go about it - and, of course, I think maybe it's a two-way process, but to the extent that the Feds agree to and require them to protect a particular set of data and there is no cross harmonization of what those needs are, we come up with all these different data definitions, data names, data sets and it really makes it hard for us to do the kind of thing that we are now trying to do, and I think we are now approaching.
Just to give you an example from my area, I'm also - since I'm the Affirmative Action Officer, I also deal with Equal Employment Opportunity, and I am so old in this process that I remember sitting down at the Princess Kaelane(?) Hotel with Mel Humphries from the Federal EEOC in D.C. to come up with the collection categories for Hawaii, because Hawaii's categories, everybody recognized that the Mainland categories would make no sense in Hawaii, given our ethnic makeup.
So, however, we came up with probably a collection set that was just as bad as the Mainland set was to us, that we collect White, Chinese and Koreans as one group, Hawaiians and part-Hawaiians as another group, Japanese as another group, Filipinos as another group. You can see where this is going, because we - heavy Asian in Hawaii, but everybody else is Other. (Laughter).
So because they said - well, at that time - this is - now, remember this was 1972 - they could only fit six data sets in their computer system, and - however, it is now 2003, and we are still using the same categories. (Laughter). So you can see what the inertia of setting up a data-processing system and why it takes a great deal of effort to try to take that apart and put it back together again in a more rational framework, and one of the things I guess I would impress is that we really need to put continuous pressure on what we need to do to change that, to make it a more sensible, I guess, way of collecting data for our purpose, and I am speaking primarily to Hawaii's purpose, but I think that would also be useful nationwide.
And the other thing that Carol brought up that is really useful, I think, in other settings and what also comes up all the time in ours is because Oahu is the -basically the B where 80 percent of the population lives, we can always get random sampling really great, really nice for Oahu, but when you go to the county of Hawaii, the county of Maui, the county of Kauai, unless we do additional sampling, we cannot get the kind of sampling frame we need to get the kind of data readings that we need to have to actually feel confident in what we are getting.
So that additional sampling always has to be, to me, an issue that might need to always go into everything that is done in order to get real data for small areas.
I think that is basically what I would like to say.
DR. MAYS: Great. Thank you.
MR. SPOEHR: Thank you.
I'll be very brief.
My name is Hardy Spoehr. I'm with Papaolalokahi, which is the Native Hawaiian Health Initiative, funded under the Native Hawaiian Health Care Improvement Act, which is Federal law, in the State of Hawaii.
I think you have heard probably the last two days everything that needs to be said.
Our testimony, which we did supply you, I think indicates that basically what we are looking at are the same things that you have already been told, to look at over-sampling of the smaller populations to clearly identify what those need areas are.
With the Native Hawaiian population, there are also B and Carol mentioned that B entitlements that go with the identifers. So unlike the other populations, there are some real issues that may relate to data collection for the Hawaiian community, both positive and negatively, but the important thing to keep in mind is that there are or there is a political relationship as part of this whole data-collection piece as it relates to the Hawaiian community, similar to American Indian and Alaskan Natives, so that it is not necessarily simply a matter of amalgamating or disaggregating, but it is crucial for the Hawaiian community as well.
The other interesting piece that I think most of you who live in other states in the United States may find is that you probably have Native Hawaiian neighbors that you don't know about. The last Census indicated that every state have a Native Hawaiian population, and as would seem to be a national trend, there is legislation pending which would be applicable to Native Hawaiians on a national basis as it relates to Medicaid, and so it will be crucial at some point perhaps that Native Hawaiians be identified nationally as well.
If you will look at the Census data, it indicates that just as B well, not quite as many Native Hawaiians live on the Continental United States as do in the State of Hawaii.
So it's an interesting dilemma, and I don't have any easy answers for you, but I think it is certainly an emerging area that we need to look at, and I think within the recommendations that you have heard probably over these last two days, the answers lie. I think Carol's comment about what is it that we are trying to measure as it relates to these health disparities is extremely important.
So thank you for the opportunity to address you today.
DR. MAYS: Thank you also for presenting us with a report, because it also - I looked through it and it's very thorough and it gives a lot of background. So I think it adds to the presentations that we have. That is always useful for us in case we miss something, to have these reports. So I appreciate your pulling it together.
Dr. Sorenson, can you join them at the table, and what we'll do now is have questions for the group of you, since this is about Hawaii.
Questions? Don.
DR. STEINWACHS: Part of my education, to be a Hawaiian or to be part Hawaiian, would you tell me just a little bit about what the legal definition is so I understand? You now say that every state may have to collect this - someday.
MR. SPOEHR: Well, that is not as easy as it may sound.
DR. STEINWACHS: That's why I said you can just give me some elements. (Laughter).
MR. SPOEHR: There is a state definition and a Federal definition B
DR. STEINWACHS: Okay.
MR. SPOEHR: B and I'll start with the Federal definition which is basically anyone who can trace their ancestry back to a member of a population that lived in the - what we now know as the Hawaiian Islands prior to 1778, which is the arrival of Captain Cook. So there is no blood quantum, but there is, indeed, a requirement that an individual be able to trace his or her genealogy to that time.
There is also a state definition that is derived from Federal legislation as well. In 1920, the Congress passed the Hawaiian Homestead Commission Act, which was a Federal act which provided land entitlements to those individuals who are of 50 percent Hawaiian ancestry, and at the time of statehood, Congress transferred that responsibility to the new State of Hawaii.
So at the state level, there is a definition for Native Hawaiian, and the way you tell this is by looking at whether it is a small >n' or a capital >N'. If it's a small >nh', that equates to or denotes a 50-percent Native Hawaiian blood-quantum requirement.
In Federal legislation, it's a capital >NH', which denotes no blood quantum.
So you need to know at what point whatever you are addressing, whether it is Federal Legislation or state law, what definition is operational.
DR. MAYS: Other questions? Nancy.
MS. BREEN: Yes, I wanted to - thank you all for your comments and presentations. I thought it was very helpful.
This is for Catherine. You gave us Appendix 2, which was Hawaii's model of having some consistent and detailed categories for race, ethnicity, aggregated and disaggregated ethnic groups, and I wanted to know to what extent - it sounded like this was in the process. Is this fairly new and in the process of being disseminated, and I wanted to know either how it has been disseminated or what the plans are for dissemination, and if it has already been disseminated, how? You said it wasn't law or anything. It wasn't really binding, but to what extent you are finding people are buying into consistent definition like this, because it strike me that it's a possible model for having the kind of detailed racial, ethnic categories that many, many states have been asking for. It wouldn't necessarily have the same detailed distinctions that Hawaii has, but I think it's a model for this kind of thing.
MS. SORENSON: Well, last December, we held a forum for Department of Health Division Chiefs and data persons and anybody else that wanted to come, and one of the important points that was covered is we introduced this model to get a sense of what people felt.
This whole thing was driven, again, by the development of our data warehouse, where the technology was driving what was happening with the data, as these disparate data sets were coming with all of - just all over the place, and how it was being collected and defined, the technology required some conforming coming, and everybody is nodding and agreeing. We received comments when we talked with the programs individually. Thank goodness somebody is doing something about this. So I don't believe we are going to have any arguments at all.
One of the other things that came out of that first forum that we are going to be following up this spring with a second forum is we asked the question - there is a tremendous amount of angst going on in collecting all of this. Lots of energy. We're just collecting and collecting, and the question was raised, so what do you do with it, other than send it off? How, at the program level, are you using this? How does WIC use this? How does MCH use this? Is it - are you just reporting it type of thing?
And one of the programs - Hanson's Disease Program - was able to say, no, we do use this, particularly for our populations from the Pacific Islands. They need to know is this person from Palau? Are they from Chuuk? And when they approach the family, they keep in mind the cultural issues that are important for that, and I thought this is the level of then applying, and then I thought, it goes in hand with counts are important. Department of Health, of course, deals with population health. So we have to report out rates, but our programs deal with counts, those numbers which may not be large, but are important when delivering services or asking contractors to deliver services.
So that is how it was kind of born, and that is the way we will - the technology, as people go to our data warehouse and look at the data, they'll find that we'll have pre-designed reports that they'll be looking at, and this is how they'll come. Maybe not down to the fine level of from under Asian, Other, you know, Butonese, Indonesian, et cetera, because I think those numbers are very small, but they will certainly see this aggregated middle ethnic level.
DR. MAYS: I'd like to ask a question about the POL recommendation that says that it expediently - that this committee, that it expediently develop a protocol for consultation with the Native Hawaiian population on data collection and health statistics.
When you say develop a protocol for consultation, can you share a little bit more what you're thinking?
MR. SPOEHR: Sure. Deputy Secretary Claude Allen(?) recently included Native Hawaiians as a component in the Intra-Department Council on Native Americans, for the Department of Health and Human Services, and so like with American Indian and Alaskan Natives developing a consultation process, we are in that process of working out a protocol for consultation with the various departments and segments of agencies as well. So we would like to ask - and that is what we generally have done over the last couple of months, since the inclusion of Native Hawaiians in that intra-department discussion - to develop and let agencies know that we would like to develop a protocol for their discussions with the Hawaiian community as it relates to whatever it is that particular health aspect. In this case, health data and health statistics.
DR. MAYS: Audrey, is that more for the data council - where all of the different agencies - institutes and agencies are together, rather than -
MS. BURWELL: Yes, and at other departmental levels, but I'm sure that they'll be working on those issues.
DR. MAYS: So it probably - Audrey sits on the HHS Data Council. So it is probably now been passed to the data council. So we have already helped. We passed it to the data council.
MR. SPOEHR: Thank you very much. (Laughter).
DR. MAYS: Okay. Is there any other - Don.
DR. STEINWACHS: Just wanted to ask Carol, you recommended more qualitative analysis, and, you know, certainly, in health statistics, one important role for qualitative analysis is to help you understand what are the categories. What are meaningful things around which you collect? And that easily then fits in to the kinds of data sets people talk about.
Did you have proposals that sort of went beyond that? Because the systematic collection of qualitative observations is probably more complex, and certainly an area I don't know much about. I just wanted to get a better sense of when you talk about, you know, focusing more attention, which I think is good, on qualitative methods, particularly to make sure that we've got the right sort of categories and concepts and constructs.
DR. MURRY: I doubt if there is a way to systematize that. It's possible that if something was being collected over time, but I thought about this last night, because I thought in relation to the focus that you are taking, how does my recommendation fit.
I know that in the issue of the uninsurance, I saw that the qualitative data had two roles, one that was valued by our partners and the other that I saw as being critical for developing programs to address the disparities.
What was valued by our partners was the quotes of people and the stories that were B you know - we had to change were useful in getting support for the advocacy to make these changes. So that is one thing that is important.
The other thing, I think, is - and funding with that support.
The other thing is an appreciation of the magnitude and the reasons why. We interviewed one physician who told us about a family whose son had broken his - I can give this in detail, if it's not going to be disseminated further -
DR. MAYS: Well, just so that you know, we are on the Internet.
DR. MURRY: Well B okay.
SPEAKER: How far is further?
DR. MAYS: Yes, we're on the Internet.
DR. MURRY: So I am going to say the child, a nine-year-old child, had broken a limb, and the parents were - they were not covered. They paid cash to have an X-ray and then the break was bad. The doctor recommended a specialist in casting. The family did not want to take charity and did not want to incur debt, and so the child sat for months in pain without the arm casted. The break was in a growth plate. The child is going to be effected, and, you know, this kind of story, I think, is one of the more dramatic, but these kinds of issues were going on again and again.
I think that people tended not to have an idea of the magnitude of the suffering that was taking place. I think qualitative data gives you that, because if you don't ask those questions, you don't know, and, also, you don't understand what are the things that have to change.
The issue of accepting charity was a very big one, especially with the Native Hawaiian population that people don't want to accept charity. They have a lot of pride, and also not in using health care, so that was something that was important.
I was hoping somebody would ask me a question, there was one thing I forgot to mention, and I'll do it really -
SPEAKER: Let me know what the question was B
DR. MURRY: Okay. (Laughter). I can't speak much about American Samoa, but we had planned to do something together and we developed jointly with the university assisting the college there to do a similar kind of research policy development, and the criticism B it didn't get funded, and the criticism was that there wasn't enough data. The data isn't available, and we had included a piece of infrastructure development - small piece of infrastructure development in the proposal and the criticism was that that wasn't appropriate.
I would advocate that particularly for places that don't have data now that it is important to build that capacity and that it is important to build in the infrastructure, even for Hawaii.
When I asked colleagues before I left, you know, what they wanted to be sure was said and that issue of carve out funding for the infrastructure for data collection in all endeavors, because, otherwise, it won't get done. It gets lost in the shuffle.
DR. MAYS: All right. Thank you very much.
Can we bring this to a close? It's almost - well, sure.
MR. LOCALIO: A quick question.
DR. MAYS: Sure. On both sides, unfortunately.
MR. LOCALIO: Privacy and confidentiality. As an example, you have to over-sample the outlying counties. You then have the trouble of possibly the information you are collecting can't identify somebody.
If there is a tradeoff between collecting data with sufficient detail and having the chance that somebody may be identified if the data are put in the wrong hands, how do you - where would you draw the - how would you trade off? Which would you prefer, not to collect data in the detail you needed or risk breeching confidentiality if the data fall into the wrong hands and somebody is identified?
MR. SPOEHR: I would just say ask the community.
MR. LOCALIO: Thank you.
MR. SPOEHR: That's fine.
DR. MURRY: Because, otherwise, it's like which of your kids are you going to give up. You can't give up either of those things. You have to assure confidentiality.
DR. MAYS: Thank you very much.
Again, part of what the hearing has also helped us to do is learn things, and I think Hawaii is an area that enters your data needs we don't know as much about as we should, but, as of today, we have learned a lot more than we have known in the past. So I appreciate your time and effort. Come a long way to get here. So we appreciate your sharing this information with us. Thank you very much.
DR. MURRY: Thank all of you, Audrey and the committee. It's good to see that you are all at it.
DR. MAYS: Thank you.
Okay. What I would like to do at this point B Audrey B I'm sorry. I just wanted to check in with you, because I know there were a couple of other people we were attempting - do we have any other B Okay. I just want to make sure, because I know there were a couple of people who cancelled yesterday. We were trying to see if we could get them today. So I wanted to make sure before we closed this off that we don't have them.
Virginia, thank you for being here. Travel safely and - oh, yes, see you on Friday.
Agenda Item: Subcommittee Deliberations of Testimony
DR. MAYS: Okay. I would like to do a bit of what we did yesterday, only shorter in scope, and that is to try and quickly go over what we have heard today, see if we are getting some of these recommendations down so that we can make sure that we capture as many of the recommendations as possible, that we have the capacity to - on Friday, when we have our retreat - to bring up those things which particularly have resource implications as well as one of the things B Gracie, did you pass out for everyone the work plan? Was it just the three of us? Okay. That's fine. That's fine. No, it's okay. Because I don't think B
DR. STEINWACHS: We happen to know who does the real work around here -
DR. MAYS: But, no, we don't quite view it that way. We view this as a team effort, but that the paper ends up with us, but that how it gets onto the paper is a function of the entire committee. So the reason I had them bring the work plan is because by Friday, we should probably update this work plan, given many of the things that we have talked about.
So, okay, let's start with recommendations, things that you have heard today that we want to make sure that we underscore and we kind of agree on, so that we can put them forth.
DR. STEINWACHS: These are building on what we did yesterday, I assume.
DR. MAYS: Yes.
DR. STEINWACHS: You know, the experience we heard about, of the sort of comprehensive community survey being done in Palau, that model, I think, has a lot of attractiveness. What wasn't discussed was a linkage to between that survey and how those data might become a national resource, and I probably should have asked it at the time, but it was really that sort of question of could those data then be something that is part of our national health statistic system, at the same time they are the kind of community resource, and so I like the model, but we probably need to talk about that other linkage in that model to make it something that serves everyone's purposes.
DR. MAYS: Good question. Good thought.
Anyone else in terms of things -
Suzanne.
MS. HEURTIN-ROBERTS: Well, and, again, drawing upon what we talked about yesterday, I would be remiss if I didn't mention that we need to emphasize the utility of qualitative methods. As former Chair of the Qualitative Research Interest Group at NIH, I -
DR. MAYS: Oh, that's right.
MS. HEURTIN-ROBERTS: That's right.
DR. MAYS: That's how I first -
DR. STEINWACHS: Let me add one thing, because it struck me in what Carol was saying is that, you know, stories are powerful tools, and I guess B and I am not a qualitative researcher, even though I would like to learn more about it B there are better techniques these days for analyzing qualitative, and so it struck me an interesting question is should national health statistics begin to somehow try and collect stories, and then if we did collect stories at sort of an analytic level, how could we use those in addition to being able to use those as powerful communication tools?
DR. MAYS: I think it goes far beyond stories. I mean, that is just the B
DR. STEINWACHS: I'm more traditional -
DR. MAYS: That is very traditional. It's just the tip of the iceberg. There's an incredible amount - an incredible diversity of the sort of information you can get.
I think one thing you can do with qualitative methods is you can describe and analyze processes by which outcomes occur, and so, you know, your data, your quantitative data tells you what is or what has happened, but to get how it happened, I think you really need the qualitative.
DR. STEINWACHS: Since we are bouncing this back and forth, let me just - it seems to me there are two functions and they are both critically important.
One is sort of the monitoring function which probably doesn't necessarily probe as much into causal sequences, but sort of identifies there is a problem or things are going astray, and then there is a much more targeted effort that says, how do we intervene?
And we had a little discussion before about should we think about a paradigm shift that says health statistics are there to try and help us intervene versus monitor, and I think if you take that jump and say this information is supposed to support trying to design interventions, then it seems to me what you are talking about becomes very salient.
DR. MAYS: Also, I guess I want to piggyback on what the two of you are saying about the qualitative methods, because maybe we should also think about - given the diversity of the populations we are collecting data from - that in some of those populations - you know, when we were talking before, your suggestion about, well, you know, once you get a caddy(?) up, you're jumping all around anyway, you have a core set, and there are populations in which the story is better told as a story in the sense of it's not a yes, a no, how many times and where do you go, but, instead, it's like if you listen to the story, you actually are told much more and that that is the way the particular sub-population is used to communicating, and it's almost like the - you know - just now, in the presentation we had when Dr. Murry was telling the - you know - the story, it's almost like you really understand that if you were to intervene what it's about. It's not about someone refused care or someone came in late for care. It has to do with a cultural principle and belief that needs to be changed, but I don't know a question you could have asked, when you think about it, that would have really told you what was going on in that situation. You needed to know the kind of cultural background in order to be able to do that.
You want to go to the mike and identify yourself? You have a comment?
MS. HUNTER: Yes. Mildred Hunter, Regional Coordinator of the Office of Minority Health, Office of Public Health and Science, Region 5, U.S. Department of Health and Human Services. (Laughter).
I would like to support Region 5.
DR. MAYS: (Laughter). Like the military.
MS. HUNTER: (Laughter). Yes. I'd like to - you know - support the use of the storytelling, because it is through the storytelling that we will convince policymakers and decision makers on the importance of collecting data for - you know - various sub-population groups, and I think it is through the storytelling that we will understand that if we - as long as we have the data as presented right now, we'll never be able to do much in terms of closing the disparities gap or to eliminate health disparities, you know, in this country and around in the possessions and the territories.
So I would - you know B just reinforce the collection of the stories, and this is where you have to get persons at the table, the ones who can translate the stories into the data for those persons who can only look at this from the perspective of numbers.
DR. MAYS: Thank you. I think it's a good point.
SPEAKER: Could you tell us where Region 5 is?
MS. HUNTER: Well, we are at various places. (Laughter). In some states, the data is very - you know, it is collected by sub-population groups, and for some other states, we are still back - you know - in - I call it back in time.
SPEAKER: My question was even more basic -
DR. MAYS: Oh, geography -
MS. HUNTER: I generally do that, but the last time I did that B
DR. MAYS: I took it the way she did.
MS. HUNTER: - they told me that I had taken up all of my time, so there was no time for a question.
Okay. It's Illinois, Indiana, Michigan, Minnesota, Ohio and Wisconsin, and so we have B you know - a great diversity of populations, you know, within the Midwest. So I'm - you know - one of the proponents of collecting data with sub-populations, because like in Minnesota - even though this is not the topic of this discussion - they are getting a lot of Somalians, which are presenting, and so I think it's - you know B what happens with sub-populations across this country that once we resolve those issues for any sub-population groups, then we have the solution for all of the populations, and I think we B you know - sometimes forget about the public health principal in terms of translation of viruses, illnesses and conditions, and then we don't approach this from a public-health perspective. So we need to integrate public health, truly public health and data.
DR. MAYS: Just so that you know and her region knows, Mildred has advocated, on more than one occasion, that as we talk about the Asian, other Pacific Islander population - I don't know if she's actually told me about the Native Hawaiians - but that we should be in her region, and the information - and she is being accurate, because the information that we received has told us that California, New York, Illinois - so just so those of you know, Illinois has been very clear about it would like us to know more about the contextual issues that surround those populations in the Midwest, because there is more rural issues that are more like the - you know - that are different than what you see in California and New York.
MS. HUNTER: Yes, because, as just demonstrated with the presenters from Hawaii, they took the initiative to develop a data set, and I think when you move outside this area into the Midwest or some other areas where there are smaller populations, then, you know, sometimes that people are just sitting in the room, the lightbulb goes on and says, this is something that we need to do, and that is the only way that we are ever going to make changes to let people know that - you know - this is something that can be done, because people are making excuses on how it can't be done and spending too much energy on that, and so just hearing this, in terms of what happened in Hawaii and some other states B
DR. MAYS: Right. Well, we also hope that -
MS. HUNTER: And I'm glad to even hear what Hawaii is doing, because then I can go back and tell some states, well, that in Hawaii they are not collecting data on these populations. So it is the reverse of what is happening someplace else.
DR. MAYS: Great. Thank you.
Share with them our transcripts, et cetera, on the Internet after a while, so that might be useful, too.
Another recommendation that I think we heard consistently was - and I really don't know what we can do, but I think we need to think about it - that's harmonization of data reporting. Dale, unfortunately, had to leave, but he commented that some of this is legislative.
Audrey, then Bob -
MS. BURWELL: I think we have a direct link, because the NCHS is a liaison to the World Health Organization - you know - International Data Coordinating Center, and they meet every year. So that is one entree into it, because most of the NGOs, non-governmental organizations, meet and they discuss data-standards issues.
Another is that in the general, broader sense of this data-standardization movement, I think this is where we can also put our two cents in, if the committee so decides. So there's a number of ongoing activities through which the departments engage that this committee could advise upon.
DR. MAYS: Okay. Then I think definitely we should try and figure it out, because that just seemed to be very significant, and it seemed that probably the resources that go into that could be better used in other ways. So if there is anything we can do about that, I would actually push it up as one of the priorities to look at. So put it on our agenda at another meeting to have, I think, during a breakout, a discussion of this and a discussion - if you all could prepare a discussion of ways in which - the different points at which we can comment. So let -
MR. LENGERICH: Can I comment about that?
DR. MAYS: Is it directly on this?
MR. LENGERICH: Yes.
DR. MAYS: Because I've got other hands before you.
MR. LENGERICH: Yes.
DR. MAYS: Okay. Go ahead.
MR. LENGERICH: Yes. Back when I was with CDC, and shortly thereafter, I mean, there was a fair amount of discussion - and I'm not sure where it ever ended up - was to bring those data sets together.
Now, obviously, it didn't actually happen or at least happen in the situation that we would like it to. So I guess I'm wondering about the data council also, and it seems like this is a place for some input or some discussion with the data council would be particularly helpful, because I think all of those - most, if not all of those examples were health data that would be within the data council's purview.
MR. HUNGATE: I'm still learning. (Laughter).
I want to borrow a slogan from another field in the term of think globally and act locally -
DR. MAYS: Okay.
MR. HUNGATE: - because what I heard is that the place where disparities get repaired is locally, and so what we are trying to do is build an information system which strengthens the ability of communities' areas to improve reduced disparities. Now, to that end, it seems to me that there are some core data sets that need to be following consistent definitions.
Now, the harmonization is a level different, I think, than birth statistics, death statistics, Census and healthy-people datas, where I don't get the feeling that there is a - and, again, I'm exposing my ignorance, perhaps - a voluntary standard for what the list is of this sort, the matrix of the ethnic groups in Hawaii. This isn't what would work in Arizona. It's different, but someplace, you know, you can visualize that you could do what would work in Arizona and combine it with what would work in Hawaii and so on and that there would be a full list of what they are, and what you do locally is pick your definitions that apply where you are. So you don't have to collect everything, because you don't need everything, but if you are going to collect, you gotta collect in categories that are aggregable. Do I make sense?
SPEAKER: Yes.
MR. HUNGATE: Does that exist?
DR. MAYS: Well, I was going to say, let me make a suggestion about B because I think there are pieces in different places like, okay, we got a new piece today and somebody else might have a piece.
There are two groups that I can think of that might be able to help us with this, and one is the Office of Minority Health. I have a feeling that they not only have a resource center, but that this may come under their purview, and we might find whether or not they would be interested in undertaking a project to try and bring this altogether. I mean, they actually do projects, let contracts, et cetera.
The other place that this might be is - and we don't know what the status is, but we discussed last time the possibility of some planning efforts around some of the methodological issues, and we might put this on the plate of that particular group, if it goes forward.
MR. HUNGATE: I want to make an even stronger recommendation.
DR. MAYS: Oh, okay.
MR. HUNGATE: I want to recommend the establishment of a voluntary standards organization for the generation of this language and matrix.
DR. MAYS: Tell me what that would look like to you. I mean, like who is the group that you're thinking -
MR. HUNGATE: I don't know yet.
DR. MAYS: Oh, okay.
MR. HUNGATE: No, I don't have - you folks know the field. I don't.
DR. MAYS: Okay.
MR. HUNGATE: But it just cries for a standard of some sort, but it seems to me that it has to be developed by the participants, which means it's gotta be a voluntary standard. My familiarity is all in the electronic world, where you are trying to get international standards so that things work together, and this is the same problem, but it's information, and so that is the argument I am - and then why I'm saying don't study it, but what you are trying to do is come to a standard that can work. Do it.
DR. MAYS: Okay.
MR. HUNGATE: That's what I'm trying to argue for.
DR. MAYS: Then my next suggestion would be that we consider bringing this up at the full committee, because it involves - we have Standards and Security. We have Marjorie as the NCHS representative to WHO. We may have all the pieces actually - not in populations, but we may have the pieces at the full committee level.
So what I am going to suggest, since you are going to be with us at the retreat, is that we introduce it at the retreat to ask the question where this is best worked on, and I think what we are going to find at the retreat is because Marjorie is there with WHO, Audrey is there in terms of OMH, Dale is there, and Audrey is there in terms of the data council, that we might be able to figure out that there is a way to do this, to move this along, because, I mean, it's interesting. It's like the Standards people have taken up a lot of other issues. It will be interesting to figure out if they cannot take this up as a very specific issue.
MR. HUNGATE: I think it can be a clear report recommendation from this subcommittee, because this is where -
DR. MAYS: Yes.
MR. HUNGATE: - the action is. It gets implemented in other ways, but it seems to me -
DR. MAYS: Well, Standards actually knows the method. We know the issue and the content.
MR. HUNGATE: Right.
DR. MAYS: Standards knows the methodology, like, for example, not one of us knows which group to reach out to. Standards knows exactly who to call in.
MR. HUNGATE: I'm not convinced that they would, because I think that the -
DR. MAYS: That Standards would?
MR. HUNGATE: I'm not convinced.
DR. MAYS: Our Standards?
MR. HUNGATE: Our Standards.
DR. MAYS: Our Standards? (Laughter).
MR. HUNGATE: Right. I'm not - Because B
DR. MAYS: If we ask our Standards -
MR. HUNGATE: Because I don't think there's any owner.
SPEAKER: Our standards are high.
MR. HUNGATE: There's no owner of this agenda. So there's no - that's what I'm -
DR. MAYS: No, no, no. We wouldn't give it away. We would share it with them.
SPEAKER: We'd work with them.
DR. MAYS: Yes, we would work with them kind of thing.
DR. STEINWACHS: There is the Public Health Standards Data Consortium, which Marjorie is on the board of, which has CDC support, and so that could be the framework for the voluntary activity that Bob is talking about, but it needs the oversight -
DR. MAYS: Yes.
DR. STEINWACHS: B of NCVHS, and I think that - you know - it's trying to figure out how to move that, because that exists in all sorts of other areas in industry, which - Bob saying, and that's how you know when you get a screw, you can screw it in, put a nut on it and things like that.
MS. PAISANO: I just wanted to add I think throughout these last two days and before we are always hearing that Census are the denominators for a lot of the staff, and I think the Census Bureau is a key resource in how they do their classifications.
DR. MAYS: You know, I made a suggestion before, and it's, again, one of those things that has kind of fallen between the crack, and I'm going to bring it back up again and say one of the things I think that we should do on the subcommittee is to ask the Census people to join us.
Census has actual - you know this better than I do - like subcommittees. They have a Pacific-Islander one, an Asian one, an African-American one, and I don't know B and I think they meet together as a group. As a matter of fact, they have a whole list - and I asked Audrey to see if we could get it, but I guess we weren't able to get it - but they had a whole series of recommendations that they have already made around data issues that we just need to receive from them with them. So we need to ask Census to see if they'll attend our subcommittee meetings, at least, because we all keep coming back to - you know - some of the Census issues, and they are working on these issues probably in parallel. They are trying to impact Census. We are trying to impact NCHS, and I think it would be useful for us to pursue that.
MS. PAISANO: I agree with that.
There was a set of meetings around October 1, the Race and Ethnic Advisory Committees to the Census, and one of the things they were discussing is what should be tested for the race and ethnicity questions, and some - this is 2003. I think they had a small content test this year, but they were asking feedback from their advisory committees on what items should be not only tested, like with the national content tests or small - but cognitive research.
DR. MAYS: See, we should tell them, you know, if they would review our testimony, they would actually find quite a bit that is being suggested.
MR. LOCALIO: Before we get off this point, I think it would help us if, before we went to Standards or Census, we just laid out very briefly what the characteristics or needs of a categorization or classification system might be. I think we have heard some wonderful suggestions here today, but one of them - I mean, the ones that I have heard today, has to be enough room on the computer to handle - okay B to handle - (laughter).
The second one is it certainly has to be hierarchical, as ICD-9 and -10 are, so that one can be very discreet, but one can aggregate to any level desired. So, today, we can aggregate to the DRG level or the MDC level, and then that's based on ICD-9 codes, which are based on - it goes up to five characters and a decimal place. Obviously, it doesn't have to be that detailed, but it needs to be something like that.
It also has to have room to grow as new ethnic groups are identified, and it also has to handle mixed or multiple ethnic groups that can be used in combination.
Are there any other characteristics that we have heard today that we would want to say this is what this taxonomy or system would have to look like?
DR. MAYS: I would say the other thing is it has to be able to handle fluidity.
MR. LOCALIO: Well, it has to be somewhat flexible. It has to be able to be used locally. So it has to have enough detail for local use, whether it is Arizona or -
DR. MAYS: What I am actually talking about is when the individual record changes that it is not viewed as a mistake.
MR. LOCALIO: In other words, it has to be longitudinal. Is that correct?
DR. MAYS: In some ways - I don't know if I want to say longitudinal, because I don't know exactly, in the system, how you are going to collect the data, but there has to be the perspective that if someone's race, ethnicity changes that it isn't necessarily a mistake, but that it may be - if the person enters the system, say, at two different points - and, see, again, I don't know how the system is going to be - Point A it may be collected they were 17 years old. It was collected, and they had one answer. They come back in the system for a procedure. They're 40 years old. They are asked a question. They have a different perspective on what it is, and then, suddenly, what happens is somebody erases it and decides that what they said at 40 was what will stay, and, instead, you might have to have a system that is fluid enough that you have, for one person, two different classifications, but that if you were going to then use it for a research purpose it is equally as important for me to know what you said at 17 as what you said at 40.
MR. LOCALIO: So, in other words, there may be a temporal element to it. So it might have to be associated with a date - in other words, at birth, at 18 or someplace later on. Are there any other characteristics that B I mean, that's a good point.
DR. STEINWACHS: Well, you ask about it for a reason. So there's a contextual effect, and whether you just consider that a date in time or - someone asked you about it for a reason and you are responding to it in that context.
The other is uncertainty. You know, you may think, but not be certain, about that ethnic heritage, and so in medical care you rule out diagnoses which say you don't have - they don't know you have the condition, but I'm trying to rule it out. Well, can you have that in the classification that says I think I'm this, but I'm uncertain.
SPEAKER: Not otherwise B
DR. STEINWACHS: B versus I'm definitely - Yes. Well B well, but it's - I can tell you definitely about I'm this, and I think I'm also this. Well, that is a different kind of statement than I am definitely this and I'm definitely that, too.
DR. MAYS: Yes, because you may have only one parent information, and, later, you end up with two-parent information. So - I mean, it's interesting, you know. I think the Standards and Security people, I don't know if they are used to such flexibility. (Laughter).
MR. LOCALIO: Well, it has to be useable, so that somebody in the field who wants to collect data accurately, consistently doesn't have to have a big thick manual on how to do it. It needs to be a method that is relatively simple to execute at the local level. Otherwise, nobody is going to use it or if they use it, they'll use it incorrectly.
DR. MAYS: I think, Audrey, if you have the characteristics that he listed, then I think we are in good shape to - at least as a starting point when we bring this up.
Comments? Suzanne, then Nancy.
MS. HEURTIN-ROBERTS: This is related to this, I think -
DR. MAYS: Because I'm going to follow up on the whole thing, but then move it somewhere else -
MS. HEURTIN-ROBERTS: Okay. Well, we have been talking about race and ethnicity, but what kept coming up in addition to race, ethnicity is immigration patterns, which seem to be collected by where you were born, when you came into the United States, and maybe language of preference and native language, and those things were said again and again. So I think that should also be part of this data set.
DR. MAYS: I'm sorry. Can you - immigration and what else?
MS. HEURTIN-ROBERTS: Where you were born, where your parents were born, when you came into the United States.
DR. MAYS: Okay.
MS. HEURTIN-ROBERTS: Language of preference.
DR. MAYS: Okay.
MS. HEURTIN-ROBERTS: And language you spoke as a child.
DR. MAYS: Wow. It would be interesting to see where this is collected.
MS. HEURTIN-ROBERTS: And English proficiency. Those three things were actually brought up in terms of -
MS. BREEN: I think it was language proficiency versus -
DR. MAYS: Language preferred, yes.
MS. BREEN: Preference. Preference.
But, also, Elainie(?), you had suggested that the language you grow up speaking is the language you are going to know best or be most comfortable, and I'm not sure that is true -
DR. MAYS(?): I'm not sure that's true either.
MS. HEURTIN-ROBERTS: - but she made that contention.
DR. MAYS: Suzanne and then -
MS. HEURTIN-ROBERTS: Okay. I think what we have all said is wonderful and all of this should be collected.
I would like to go back to what Bob said, though, that if the action is going to be at the local level, you know, we've got to build infrastructure, and I heard that a few times. There needs to be some infrastructure, some support for data collection. It's not just going to happen automatically from the mists. You know, you have to put something in place for this to happen, to build this system.
MS. BREEN: You know, Bob said that. He said it really well. What I wrote down was to build data sets that facilitate local understanding and action by providing Federal support for infrastructure or maybe we should twist that around, the Federal support for infrastructure needs to do those things.
MS. HEURTIN-ROBERTS: I think what we have heard from Hawaii, and especially from Palau, a lot of the places we are talking about, at least in this hearing, have next to nothing in terms of data collection capability or capacity. So that really needs to be put in place.
DR. MAYS: I think one of the things we don't know, and - you know, we each keep saying, you know, I need to learn and this is my ignorance. I think one of the things is we don't know a lot about these other areas, and when we put the map up, you know, when we had both of the talks, I think we all are aware that we don't know about a lot of those, but, yet, as we try and do both the - population as well as considering things like nations and territories, I think there are three things we need to do. I think, one, we need to have some time where we have a presentation that - and I'm looking at Edna, though she doesn't realize it - is that we need to understand the concept of nations. We need to understand what sovereignty is and we need to understand what territories are, and I'm - you know - I realize we are on the Internet, but this ignorance has to be put out there.
DR. STEINWACHS: I think there are some legal treaties in here, too, that we need to understand enough about that relate -
DR. MAYS: Yes, so I think we need to do that first, and so we need to plan at some point in time - and we are looking to you to help us to figure out who can - you know - walk us through that, and then, two, we need to have a little bit more of a geography lesson in terms of these B all of these areas for us to understand which is what, what our data relationship is and the relationship of that data to HHS, because we are going to stay somewhat - I mean, we have to stay within our charge, which is HHS.
So the next thing we need to do is to figure out, relative to HHS, what the relationships and the issues are, because, remember, most of what we deal with it says healthy people, 2010. It's U.S. Healthy people U.S. I mean, so we need to figure out whether these are things that should be in some of these publications, should be talked about, but that there is just no data there, and, if so, then we are making a different recommendation, or, for all I know, these things may be really out of the purview of HHS, and if they are, then, you know, we can pass these things on to the appropriate group, and it may be a little bit out of our chart. So that's two.
Three, you know, I don't know where people are on this, but I think the third thing is that before we consider that we can wrap up our work on this group that we should consider either holding hearings, not traditionally the way that we hold them, but having a visit, and I think the visit may help us to better understand how these things work, because I think we B you know, it's like the stories. I mean, I think we may be able to do our work better if we understand the stories of what is behind this. We could have wonderful recommendations and nobody kind of figures out that infrastructure is a really big issue.
I am concerned that, for example, we don't know enough about the infrastructure, in terms of NHII type things. I mean, where are we with E-Gov and E- - I mean, there is a lot of things that we don't know and that sometimes you can make recommendations that are up here and very lofty, but it's like 20 years to catch up, and I think we should think about this.
So maybe after we have a discussion about more of the geography we can figure out what might be useful for us to try and visit, and then we may have to also be saying thank you to Dr. Stinson, because we may have to ask Dr. Stinson to help us to get to these places, too.
So, and I think I'm going to put that little bit on your plate and see if you can't help us come up with - both give us information to read as well as somebody who can help us, which includes you, which can help us to understand a lot of these terms and then to map it back onto the geography of what we have.
MR. LENGERICH: The work plan just got longer.
SPEAKER: It's a lifetime.
MR. LENGERICH: Yes.
DR. MAYS: Don't you have time? Aren't you on here for a while? (Laughter).
MR. LENGERICH: Oh, I see that grey hair up there.
DR. MAYS: (Laughter).
MR. LENGERICH: I would like to make one comment, and then sort of tie in to a recommendation. The comment has to do, I think, to build upon what Edna suggested about the Census, and I agree that we do need to invite them in for some - to hear from them, but I think I would also refer back to the California registry here, and their practice of needing additional data and going about and making mechanisms to create it themselves and using it.
Now, if we had 50 states doing the same thing, things become a bit inconsistent and not always having the standard, so - but I realize there are legitimate, justifiable reasons why people need to do that.
So I think having the Census is just half of the kind of testimony or report that we need to hear.
I think we also need to hear about what are the issues that states - what are the issues that cause states to go out and create their own denominators or to seek other denominators to produce estimates, because that is part of the issue. So if we are asking for a kind of a Census discussion, I think a denominator discussion is really the way that we need to frame that, because one is not going to be sufficient for all. So I would like to kind of make that as an amendment to - and a suggestion there that we have the general discussion about denominators, rather than just those that come from the Census.
DR. MAYS: Okay.
Now, then the recommendation that
MR. LENGERICH: Now, then the recommendation that I was going to make, it has to do with this geography as well, and that is building upon the testimony from our Hawaii colleagues there, and that is that there needs to be that they welcome the small - the data collection from small, potentially-identifiable groups as long as there is community support involvement in that, and we heard that general testimony elsewhere.
So I think the recommendation is that we heard testimony that these individuals and groups are not averse to small - to data collection and research on small, identifiable populations as long as there are the appropriate community connections built into it, and so I think that is - and that leads into the issue around geo-reference data then as well, so that I think a recommendation can be that groups, generally, are supportive of that as long as there is community involvement in conceiving the research, collecting the data and using the data.
MR. HUNGATE: Yesterday, I mentioned the National Children's Study and I want to come back to that again now, because I'm sure that the Office of Minority Health has worked on the sampling part of that. I would like to hear more about the detail of that approach within that study, because it seems to me that it's bound not to get to some populations, and so there is an issue behind that of what happens then, what is the action, and I think if we had this other voluntary standard in place then we would have a list to work against and begin to get population and understand it, and I don't understand it now. So I don't know what'll work and what won't.
DR. MAYS: At least what happened when we set up that presentation is I had actually requested that it be Peter Sheip(?) and that Peter Sheip also come with someone from the Social Determinates Work Groups, someone come from the Sampling Work Group and someone come from - what is the one you're in called? Health Disparities and Environmental Justice, and it got down to just Peter. So I think we can go back again and ask for those others, because -
MR. HUNGATE: I would find it really helpful.
DR. MAYS: - those are actually the groups that I think - I mean, you know, Peter is kind of the - I would imagine - the big overview person, and so I think maybe we need to go back again.
But, again, I think we don't have Leslie on the line. I think what we are going to do is we do need to work on this letter. So I think we won't work on it at the meeting, but each of you has a copy again of it, and I think what we need to do is to figure out what we are going to say to them about these issues. While we can have somebody else come in, Bob, that is not until like March, and they are really moving along quickly. I mean, I think people B I kept trying to tell - I think people underestimated that. There is a lot of background - it looks, in the foreground, like it's kind of low key, but in the background, there is actually a lot of planning that is taking place, and so he was very clear - Peter was - that if we are going to recommend something he would prefer sooner rather than later.
MR. HUNGATE: I guess, then, I would like to try to ask a question in the letter that says, for which populations will this study provide statistically valid data?
DR. MAYS: Okay.
MR. HUNGATE: And for which will it not?
DR. MAYS: Okay.
MR. HUNGATE: And then what is the strategy for dealing with the nots? I think that is the way to express my knowledge need.
DR. MAYS: Okay. I mean, I think we can - Audrey, you have the question - that we can consider that.
What we'll do, then, with this letter is try and schedule a conference call, because we want to work on it to have it for - we still haven't been polled or told, but, Gracie, do you know has it been decided that we are definitely having a full committee meeting?
MS. WHITE: For January?
DR. MAYS: Yes.
MS. WHITE: Yes.
DR. MAYS: Okay. And it's on the 27th or -
MS. WHITE: 28th, I believe -
DR. MAYS: Okay. So we are having a full committee meeting. So we want to have this letter available for the full committee meeting. So let's schedule a conference call.
Yes.
DR. STEINWACHS: Two things. One, reaction to Bob, you know. When I heard that testimony on the children's study, I left with the uneasy feeling that there were some complicated tradeoffs they had not worked out and that if you are really in a biological model rapping around some social and other variables, it wasn't clear that representativeness of America was that critically important to many of the people at the table. It was important to us, and so I remember Edna very nicely asked the question about, well, how are you going to - you know - deal with the American Indians, and there are over 500 tribal governments and so on, and I said, well, you know, we will, you know, but it was just - I have been through those kind of discussions and there is a group of science that would weigh in that says the diversity isn't that critical around the variables we are concerned with, only around things that they see as particularly affecting social, environment, genetic, you know, and health-care issues.
So I think we ought to press. I'm agreeing that we ought to press hard on this and not let it slip by.
DR. MAYS: Okay. All right.
DR. STEINWACHS: There's another thing. We were going to talk about geo-coding, I think -
DR. MAYS: Yes.
DR. STEINWACHS: - or try, and Gene is my expert I know and so - because I would, sometime, if it is appropriate - and Gene would probably be able to answer this B love to see us get some exposure from the private marketing firms in this country that pull together all sorts of data. Many of them are health related in some way and social related, and they geo-code them into stuff that people buy in order to say where do I market X, Y and Z, and there is a technology there, which, it seems to me, might be a technology that we could use in health, particularly at the community level where you are talking about linking in things that are - and I don't know, Gene, whether you have ever gotten involved in it, but just - when I think about what they know about me sitting in my house and what to deliver in my mailbox, I figure that if we could do the same thing for issues around health, we could target and support health initiatives in ways that we never have, and so - Gene.
MR. LENGERICH: The one product that I am most familiar with comes out of NCI, and particularly the Cancer Information Service or maybe it is used by other individuals, but the Consumer Health Profile, CHP, I believe it is, but I believe they code each of the Census tracts into one of 64 groupings. The titles aren't too attractive, but they seem to be utilized, at least, or -
DR. STEINWACHS: So you can tell me what category I'm in, Gene?
MR. LENGERICH: Yes - well, yes, we could, but maybe our NCI colleagues know more about it, but that would be -
MS. BREEN: The aging baby boomer? (Laughter).
MR. LENGERICH: Yes. I mean, there's all sorts of -
DR. STEINWACHS(?): Can we get rid of her. I don't think I want to have her on my - (laughter).
MR. LENGERICH: But that is an example of how it is used in the social marketing for health issues, and so, yes, we can point to - we could point to groups that use that - develop those sorts of data bases and make them available for social-marketing purposes.
DR. MAYS: If you want to come to Los Angeles again, I mean, I know that it's a place of not - you know - great things to do B
MR. LENGERICH: Well, I missed it last time, so you need to invite me back.
DR. MAYS: - or great things, but at UCLA, we are about to put on a meeting, and it really is going to be the use of GIS and geo-coding and health, and part of it is - it's designed to be at three levels, one for people this is brand new, for people who are already users.
We are going to have a B for people who want to learn, we are going to do half-day workshops. One of the workshops will actually be for the community, how to do this.
So some of it is going to focus on racial and ethnic minorities, and then some of it will be just more broadly about how to use GIS, and I think we are going to try and do it March. We are still in the planning stages. So I'll send you an email, if you want to find a way to come to LA.
MS. BREEN: In addition to social marketing, we were curious a few years ago to know how SEER, the Surveillance of Epidemiology and End Results, the cancer registry data that NCI collects, was geo-coded, because it is, and it turned out that they all used these small companies as well, to get their data geo-coded. So I think they are very widely used, not only for the social marketing, but even for some of our health data.
MS. BURWELL: You are going to see tons of them in the exhibit hall at APHA, geo-coding and industry.
DR. MAYS: And, also, we have our B Gracie, is it up on the Web? Do we have Nancy Kreeger's(?) presentation up on the Web? Okay. That is up on the Web that actually, in terms of some of the geo-coding, and I can't remember whether she actually - no, I think you needed to talk to her. She was talking about the different companies, and she has enough experience now with several different companies to make recommendations. So - but I think that we do want - I think as we think about this information for community groups - in particular this issue of using geo-coding, of GIS, of using something like GIS, in terms of displaying data, that we do need to give that some thought, in terms of some of our recommendations.
There were two other recommendations that I wanted to bring up. One was the need for a campaign about collecting data on race and ethnicity. If we go all the way back to our first presentation, Ellen Wu, at CPEHN, remember the perception that people have both about whether they can do it and then the perception on the other side about the stigma, and so we may need to do something about why do you collect this data, what are you going to use it for?
I mean, it is interesting, because, again, the Prop 54 campaign, I think there is a lot to be learned from it, in terms of both how they marketed it, and, for the most part, it really just said things like, you know, if we don't have information B and some of the favorites they picked were cancer and diabetes. So they picked the diseases that - you know - lots of Americans have, and said that it is important for us to be able to know about this and to know who you are in terms of having it.
So I think there is a need for us to think about - in terms of data collection B of a campaign in which we explain why these national surveys are important, you know, because we are having problems with participation.
And on the other side, I think it is important to actually say - you know, I think you were the one that brought up the point - what is it being used for, that when things are collected, it might be useful that, you know, the requirement is that you have to say something to why it's used. Then people might actually respond differently. I mean, we want to ask them about race and ethnicity, but we don't tell them the bounds of what it is used for, and then I think people think, well, now, I told this in this place, and, you know, it's like age or income where people are like, you know, I told you this for this reason. If I go over here, maybe, in my health arena, I can't tell the truth. I told Social Security people one thing, and I'm afraid if I tell another thing that my Social Security over here will get B will be impacted. So I think that is important for us to think about.
And then the other is kind of this health informatics component, and that is the extent to which we can do something about health informatics being able to be more widely disbursed.
I don't think that - you know - some of the groups that have come before us, that all the health informatic things that are available, whether they can take advantage of them. I don't know whether it's an infrastructure or whether it's also that it hasn't been introduced. I mean, we sit in D.C., so we talk about a lot of this stuff, but, you know, just things like can everybody put up a Website, and the extent to which if somebody does somebody can use it. Well, may be great in D.C., but if you have bandwidth problems, it's not someplace else, so then you also have to figure out if a person isn't doing that, you know, is there something else that should be supported, so that that information is out there.
So, I mean, health informatics are great, but we've got to also think more broadly about substitutions if they can or can't be done.
Any other recommendations that you heard today or that you want to piggyback on?
DR. STEINWACHS: Let me just ask to remind me there was going to be an effort to get the Library of Medicine involved in something. What was that? Do you remember?
MS. BREEN: It was the Data Clearing House, wasn't it? Oh, it was for questions and translations. Yes. Yes, surveys and survey questions, and Virginia thought that NLM was already doing that, and it came up in the context of our discussion about translating them into multiple languages. So we were wondering if they could modify what they were doing to incorporate that in.
DR. STEINWACHS: The other thing with NLM -
DR. MAYS: Or provide resources. There may be that that is the place where, when people want to do this, that is where the resources might come from also.
DR. STEINWACHS: The other piece just to think about in a conversation, NLM is the place that has invested, I think, was in Snowmed and some of the classification systems.
DR. MAYS: Um-hum. Um-hum. Um-hum.
DR. STEINWACHS: And if what we are talking about is a need for classification systems that are both useful to people, useful possibly in the practice of medicine, useful in public health, maybe they are also a key actor here that ought to be on the table, and part of that discussion, whether it's resources or whether it's the fact that they might provide some of the home for this in an ongoing way, if that is appropriate, because there is an updating function, there are all the things we are talking about, and I think we need both a government home as well as we may need this effort to have a public -
DR. MAYS: Are you on NHII? Do you have a person from the National Library of Medicine as a participant or you just call them in when you need them?
MR. HUNGATE: Betsy Humphries is the name B
DR. MAYS: Does she actually sit with NHII?
MS. BURWELL: She's called upon quite a lot. I don't know if she is actually -
MR. HUNGATE: It may be that someone else is there in her B I think there is someone there usually, but I don't think it's she.
DR. MAYS: Okay. Let's find out who the -
MR. HUNGATE: And I can't remember the other name.
DR. MAYS: B who this person is.
Suzanne.
MS. HEURTIN-ROBERTS: In terms of NLM getting involved with putting up the surveys and the particular questions, Virginia says they are already doing that. I think that what we would need - if we were really serious about doing that, we would need to emphasize the diversity of languages and cultures that need to be represented. We can't just go with the OMB categories.
DR. MAYS: Right.
MS. HEURTIN-ROBERTS: We really do have to -
DR. MAYS: What I was trying to figure out is if we had a person already in that it might be as simple as having the staff talk to the staff person for the other committee, but if that person is not there on a regular basis, they don't get all the information, and it means we should do it a little more formally then. So it sounds like we probably have to do it a little more formally than -
MS. BURWELL: Well, now, Betsy Humphries is on Standards and Security, and Mary Jo Dearing(?) is on NHII.
DR. MAYS: Okay.
MS. BURWELL: So staff are on it. It's just whether they are B
DR. MAYS: Let's have - when we have our conference call, let's bring Mary Jo onto the conference call and I think that will be very useful. Mary Jo, she really will follow up on this.
Okay. Other pieces? Russell.
MR. LOCALIO: I just want to emphasize the point that came up with my last question, and that is the choice as to the tradeoff between data specificity and identifiability should be determined by the desires of the sub-population of interest, and I would contrast that with the current situation which is Federal regulation, one size fits all.
DR. MAYS: This is the choosing-of-which-child-to-give-up question. I always think of it that way. Which of your children are you ready to give up?
So, okay, are there any other recommendations that we have heard? Is there anything else that we want to try and put on this plate?
MS. BURWELL: I just wanted to say to Russell I think it goes down to something even more basic, and that is informed consent, because with the informed consent, almost anything can be disclosed. It's just - so that is another thing to factor in.
MR. LOCALIO: It's a little complicated, but I think so long as we have the issue on the table, I think it's worth a separate discussion.
MS. BURWELL: Right. But that needs to be in there.
SPEAKER: There probably should be some ethicists -
MS. BURWELL: Definitely.
SPEAKER: - as part of that discussion.
MS. BURWELL: I did my thesis on -
SPEAKER: You did?
MS. BURWELL: Yes.
DR. MAYS: Really? That's interesting.
MS. BURWELL: I did.
DR. MAYS: I'm sorry?
MS. BURWELL: I don't know if you heard me. I said I did.
SPEAKER: She did her thesis B
DR. MAYS: No, I was just thinking it was interesting. She was asking for an ethicist or something. This is interesting.
MS. HEURTIN-ROBERTS: Well, if we are talking about informed consent -
DR. MAYS: Yes. No, and I'm sorry.
MS. HEURTIN-ROBERTS: And confidentiality.
MR. BURWELL: I did my Master's thesis on the N-Hanes 3(?), stored data and informed consent.
DR. MAYS: Okay. I'm going to give us a couple of choices, and that is one of the other things we were going to do is work on the letter. We don't have Leslie, so I actually don't B I think we can put that on hold and arrange a conference call.
The geo-coding, is there other things that we want to say about the geo-coding?
MR. LENGERICH: Well, I'm not sure, but let me say what I would put in there and see - and then get a response.
I think we have heard through these testimonies the need for data about specific geographically-isolated, designated, specific populations, and that is desirable, and particularly given the context that Russell is just articulating, that it be done in context with the community and the research community in agreement about that happening, and we also know, on the other hand, about data becoming much more available in mapping and geo-reference data down to a very fine level.
It seems that there are issues that crosscut with this group and two other groups within NCVH. One is privacy and confidentiality, and so because that is their issue and we have had some discussions about that, but also there's issues around standards and security, because people that manipulate those data have set standards as to - or thresholds, rather - as to what kind of data they will show. You know, if the enumerator is more than five, they'll show it. If the rate is based upon more than 10,000 people in the population, then they are willing to show it, and there are other ones that exist as well.
So I think that I would propose that we have some sort of discussion at the full committee from people within HHS who are looking at the issues of display of geo-reference data. What are the privacy, confidentiality issues? What are the standards and security issues? What are the threshold issues? And then that combined with what we have been hearing about the - or hearing the need for data about specific populations, given in context of the particular communities that - and how they would appeal for that.
So that is the way I would summarize that is that I think that we need a larger group discussion about display of geo-reference data, and specifically in those three areas.
DR. MAYS: What I would suggest is that we can introduce this at the retreat, and it sounds like - first of all, I think in terms of some of the privacy and confidentiality issues, we did have Mark come in. We do have Russell following up on this, and I think he will have a conversation with - I don't know if it is going to be Jennifer Sondick(?) or - there is further work to be done, and I think it may be some in and out, some full-committee populations, other committee.
See, this is one of these cross-cutting - that there is some work to be done by us and some work to be done by them, and I think what we need to do is - at the retreat B is to figure out how to do this piece of work. So I think that is what we'll do is introduce it there and see how it can be done.
DR. STEINWACHS: Is part of this also sort of the issue of granularity of the level at which you can do geo-coding? Because it seems to me you get down to the community level you may actually be interested in the house itself, if it's a radon exposure. You may be interested in the block. You may be interested in those elements that build up. At national levels, maybe Census tracts are good enough. I don't know what the right geo-coding is, but it would be useful, at least to me, to have a better understanding of what is the range of the possible. Could everything that we do in surveys potentially be geo-coded back to a house and a residence nationally, and so if they had other things that happened environmentally, you could geo-code it to the block, to the house, to the - you know - at that level, potentially, which locally would be very useful. Maybe nationally. You never display it at that level, but that kind of detailed capacity would be very helpful to understand. Sort of like the race and ethnicity and the Hawaiian list of is there a capacity to go down a very fine granular -
DR. MAYS: Okay. Some of that we have, but done very differently at the state hearing in - for the state hearing that was in Philadelphia, but I think that there are other issues that we haven't heard. So let's B so, okay, we'll figure this out.
Okay. Those are the issues that we have. I think what I would suggest is that we schedule ourselves for a conference call and that there is work to be done by some of the staff before we do that, and that we can adjourn today, unless you have anything else that you want to put on the table. I really think we would probably be better adjourning. Do I get a second?
SPEAKER: Second.
DR. MAYS: Look at all the head nods. For the Internet, they are nodding their head.
Okay. I want to take just a moment to thank all - I mean, even though some of them aren't here B to thank all the participants in this hearing, as well as the previous hearing we had in Los Angeles. Even though you don't get private notes from us, make this a very public thank you to all of you, because it has been very useful to us.
We apologize for how much of your time we have had to need in terms of learning to get up to speed, but better that, you know, we learned from you as opposed to going and reading the wrong thing and then doing the wrong thing. So we apologize, but, at the same time, we are very grateful for the time that you took to share with us, both basic information before you could even get to your recommendations. So thank you very much, and, hopefully, this committee leaves here more knowledgeable than when we started, and better equipped to be able to respond to your recommendations.
So thank you to all of you, and thank you to the committee for getting here and your hard work and the bumpy plane ride some people had, and they were up the next day and ready to go. So thank you very much, and I will see you all in January, and some of you I'll see on Friday.
(Whereupon, the meeting was adjourned at 3:03 p.m.)