Washington, D.C.
- Minutes –
The Subcommittee on Populations of the National Committee on Vital and Health Statistics held hearings on July 17 and 18, 2000, at the Hubert H. Humphrey Building in Washington, D.C.
The Subcommittee on Populations held two days of hearings on July 17-18, 2000 in an ongoing exploration of the potential utility of ICIDH as method for classifying functional and health status on routine administrative transactions. During the two days, the Subcommittee heard 18 presentations and talked with five panels representing the classification system, academics in related fields, consumer organizations, and people with disabilities or special needs. The Subcommittee had sent panelists questions regarding the conceptual framework of ICIDH, its current and projected uses, and the feasibility of widespread implementation in the United States (see attached).
PANEL 1: International Standards and Applications
Dr. Wolfson validated the vision and potential of ICIDH, but found the current version “not ready for prime time.” He identified elements he considered problematic or ambiguous and suggested either delaying the resolution to the WHO assembly by a year, or linking it to a transparent, meaningful process for the ongoing evolution of the classification system, with principles guiding that development clearly embedded in the resolution.
Citing principles behind the beta-2 draft she helped shape in Geneva, Ms. Lux contended ICIDH is an appropriate way to capture functional status information. She itemized how adding functional status to information collected on diagnosis could better position health care providers to increase their effectiveness. Noting that other countries have begun using ICIDH- 2 in clinical settings, she paraphrased Harvey Cushing: “Anyone involved in health care is obligated to consider more than a diseased organ, more even than the whole person. He must view the person in his or her world.” Ms. Lux suggested that ICIDH-2 enables this view.
Dr. Andersson discussed ICIDH from the perspective of people in the disability community. Every human being, he suggested, has at least one limitation whose degree is determined by current social demand. Degree of health depends on what body functions are needed and how well external factors influencing body functions can be controlled. The development of ICIDH-2 is consistent with international trends, especially the UN standard rules with implementation of equalization in opportunities for persons with disabilities and the report of the UN consultative expert meeting on international norms and standards relating to disability.
Summarizing, that the WHO sought a resolution, field information was still being collected, and groups who might have valuable input had yet to be heard, some panelists indicated they were torn between building momentum and “getting it right.”
PANEL 2: ICIDH-2 Training and Testing Activities
Dr. Placek discussed a NCHS sponsored three city rollout of a training program utilizing Code IDH-2, an instructional tool developed collaboratively by NCHS and CDC, Western U., and WHO. The courseware includes an overview of ICIDH-2, its taxonomy, and opportunities to code with feedback.
Dr. Hendershot summarized the consensus conferences. There was agreement that ICIDH-2 is a meaningful classification system for functioning disability with a wide range of potential applications in the participants’ specialties. There was also consensus that differentiating between body structure and body function and between activity and participation is useful. Dr. Hendershot acknowledged possible selection bias, and consensus group methodology was discussed.
Ms. Hawley presented a concerted effort by members of the Minnesota Chapter of the American Physical Therapy Association to utilize ICIDH to measure outcomes in more meaningful ways. Ms. Hawley advocated capturing functional status information on health care claims. She said the classification system could seem overwhelming and “blurring” of the activity, and participation dimensions required discussion and training. The chapter will incorporate ICIDH into the Minnesota Outcome Study, using it to capture the activity and activity limitation section. Practitioners will use this information in communications with insurers.
Dr. Wallace introduced a comprehensive, culturally inclusive assessment system, the Reliable Assessment Inventory of Neural Behavioral Organization. Developed independently of ICIDH- 2, conceptual and design similarities make RAINBO a practical method for implementing ICIDH-2. RAINBO scores on an identical five-point range and is easily transferred to ICIDH-2 classification. Dr. Wallace concluded that ICIDH-2 “pulls it all together”-- not only in her role as a test developer, but in terms of everything she does as a clinician, researcher and teacher.
The panelists discussed what they had learned from ICIDH and what elements were most ready for “prime time.”
PANEL 3: Considerations in Possible Uses of ICIDH-2
Ms. Wells described Family Voices, a national grassroots network of families and friends speaking on behalf of children with special needs. She presented a study conducted by Brandeis University and FV that profiled the demographics of the child. She discussed issues families think about in dealing with the health care system, how different families view their children and their special needs--and complexities she sees in the process. Ms. Wells cautioned providers to consider the tendency to only see the child and family in the service context; it is difficult to envision the whole family experience.
Mr. Griss noted parents want more things that work and providers and payers want to know what really works--and that information is not being captured to justify medical necessity decisions or decisions in coverage criteria. He noted, too, that the concept of functional equivalent is a powerful tool. He was hopeful that ICIDH-2 will serve as a practical tool for measuring change.
Dr. Crews stated that ICIDH-2 is relevant to the lives of people with disabilities; it shows relationships among the experiences of disability, interventions and public policy. ICIDH creates a method to link broad public policy with disability policy. When we really look at public policy, Dr. Crews asserted, we recognize things are related. The environment is related to participation measures: people who only respond in one domain are not doing their job if they will not advocate for consumers in the broader environment.
Dr. Seltser stated that ICIDH-2 is the only document he ever saw that really defines health. He identified ICIDH-2 as an adequate functional assessment tool that could be self- administered, computerized and used as a screening instrument to collect data serially. The result, he suggested, would be “what has been missing ever since we stopped treating everybody in hospitals--a medical record that you use to track people and help them.” He advocated ICIDH as a system that can reintroduce the one thing absolutely lacking in our health care delivery system today: the element of compassion.
Panelists and clinicians present shared their thoughts about assigning codes while precluding labeling. It was pointed out that, although the discussion had been about challenges of coding, as providers what they did was evaluate patients--and, individually and collectively, ICIDH may help improve accuracy.
BRIEFING: ICIDH-2 Revision and Applications
Dr. Ustun emphasized that the focus on the revision process was guided by taxonomic guidelines and other scientific principles. Practical utility was the touchstone: how easily, effectively and ethically the classifications worked in real life. Everybody takes the structure and modifies it to their needs. The intent is to make the driving force behind all these modifications the update and revision of the classification. The goal is not a solid, static product, but a process and standard procedure with an update mechanism, different versions, and overall comparability.
PANEL 5: Logistical Considerations in Applications of ICIDH-2
Mr. McLaughlin noted that ICIDH-2 is etiologically neutral and that ICIDH-2 would be an appropriate way to capture functional status information on health care claims. APA suggests this can be done in a relatively simple, methodologically sound manner and recommends that ICIDH-2 activities chapter codes, or a subset, be collected on administrative claims forms. APA approached WHO with a proposal to develop a standardized assessment manual with tools to accomplish reliable, valid classification. Mr. McLaughlin reported APA finds no major conceptual barriers to using ICIDH-2 with infants and children and believes the current version offers a framework that can be used across the life span.
Dr. Threats described how the University of Chicago Hospital at Schwab Rehabilitation Center has adopted ICIDH-2 as a rehabilitation model. The staff report the documentation and approach substantially increased communication between the therapies, consistency in clinical practice across levels of care, encouraged patient ownership and patient-centered teams and goals.
Dr. Stark reported that OT already uses the ICIDH model. ICIDH is emphasized in AOTA’s practice guide for OTs and textbooks, is often cited in the literature, and is emerging as a model for new program development. The University of Kansas Medical Center will begin a doctoral program with an OT program modeled on ICIDH and the participation concept. WUSM is considering ICIDH as the model for its doctoral program in disability studies. Dr. Stark noted many emerging practice models in OT utilize this concept.
Dr. Guccione observed that APTA is integrated in practice, research, education and accreditation with the NAGI model. He expressed concerns about the face validity of ICIDH, particularly in the area of participation and how it addresses the environment. He acknowledged that, at the level of vocabulary, ICIDH-2 is exciting and potentially a good resource for crosswalking to charts and developing computerized documentation systems. Dr. Guccione pointed out, however, that this may be irrelevant if ICIDH does not “hook up” with the insurance and governmental communities that are developing instruments.
The panelists noted that ICIDH’s etiological neutrality could benefit reimbursement. Concern was expressed that participation definitions might not mesh with insurance perspectives; the focus on activities (closest to what is currently reimbursed) is geared toward making this functional.
PANEL 6: Conceptual Clarity and Comparable Measures
Dr. Ruggieri identified representational issues of concern that could preclude ICIDH-2’s blanket acceptance as the representational scheme of choice for functional status data in an administrative health care form. He emphasized that creation of a model should precede formal adoption and suggested criterion to be met. Dr. Ruggieri emphasized that he would not recommend incorporation of ICIDH-2 into a functional status data field on health care claims forms, adding that the classification might have other valuable potential applications. He urged that every effort be made to elucidate those uses and their data needs and called for studies to evaluate how well ICIDH-2 serves informational needs in various clinical settings--especially domains holding particular interest in functional status.
Dr. Andresen discussed comparative norms and standard values. She specified that whatever goes into the administrative record must also be able to compare different groups and the general population. She noted the best sources about functional ability were the individuals themselves-then nurses, nurse practitioners and clerical personnel on the unit. She added it was difficult to get people to collect this kind of information on a regular basis and emphasized the ongoing need for training. She also stressed the importance of ongoing quality assurance efforts: responsiveness, reliability and validity are qualities built-in and then sustained over time.
The panelists deliberated over whether ICIDH was an assessment tool or a classification, and the significance of the system as a model.
Dr. Iezzoni convened this hearing of the Subcommittee on Populations of the National Committee on Vital and Health Statistics (NCVHS) in its ongoing evaluation of ICIDH as an appropriate way to gather information about health status and functional status for routine administrative functions. Dr. Iezzoni stated the purpose of this hearing was to talk with a variety of people representing the classification system, academics in related fields, consumer organizations, and people with disabilities or special needs. Dr. Iezzoni introduced the first panel.
Dr. Wolfson validated the vision and potential of ICIDH, but found the current version “not ready for prime time.” ICIDH has potential for broader vocabulary, conceptual framework, and international comparability. Elements central to the beta-2 revision are de-stigmatizing the language and the ability to reflect and enable descriptions of physical and social environment as parts of the causal story of the handicapped. Dr. Wolfson formulated the objectives of the current draft as an overall conceptual framework and classification set, not necessarily hierarchical, but allowing for multiple codes. For each item at the finest classification level is a precisely worded description and well-worded question for data collection.
Appropriate words validly translated result in the basis for internationally comparable descriptions of health status, questions that can be selectively used on health interview surveys and in clinical trials. The major benefit is to bridge and synthesize knowledge, and thus provide the evidence base for evidence-based medicine. Dr. Wolfson presented a diagram that conveyed bridging different domains at the operational level: three concentric circles representing (1) summary measures of population health or the McMaster Index, (2) a common core of standard questions validated cross-country and cross-culturally, (3) the ICIDH or underlying conceptual framework--a detailed item pool that serves as a source of questions, a classification structure, and an assessment instrument. A fourth piece, he noted, is the set of questions one puts on a clinical trial or health research study.
ICIDH-2 is the top level conceptual structure. The language is more neutral; it goes beyond the unidirectional representation of causality. Dr. Wolfson stated that it also is not “terribly useful” as a causal story. He said he was not suggesting scraping ICIDH. But he pointed out that there are alternative views that make clear this interrelationship between environment’s extrinsic and intrinsic factors and treat “life habits rather than handicap” as the joint outcome.
A fundamental issue is how to organize the top level of the classification system in order to make inferences that clearly describe and, as a result, infer or diagnose the relative role of intrinsic and extrinsic factors, thus avoiding the classification system blaming the victim. Dr. Wolfson said, in Canada, people found the classification not mutually exclusive, difficult to use, and had too many overlaps. The distinction between activity and participation was not clear and the conceptual rules for these items were not applied correctly.
Dr. Wolfson asserted the beta-2 structure does not seem to meet a core objective: a clearer description to support more precise analysis and diagnosis of the role of environmental factors. The option currently implicit in ICIDH does not seem to work. Another option, he said, is not to try for so much parallelism between the activity and participation levels. A third option is to make A and P questions more strictly parallel. He suggested the first option is easier to implement in the current climate with WHO. It is less radical a change for WHO to be asked to move items around than to go back and rethink the top level of the structure.
Dr. Wolfson noted that the WHO staff objective was to have the ICIDH version two approved by the World Health Assembly in May of 2001. However, the current plan is for a resolution covering ICIDH, summary measures of population health, and the pool of Health Interview Survey items. To satisfy procedures, WHO needs to circulate a draft resolution in September and a final resolution in October. But corroborating centers will not complete work until September or discuss the results until a mid-November international meeting. The problem is how to draft meaningful, fair resolutions when all the results are not in.
Dr. Wolfson summarized: (1) The basic conceptual structure is problematic. (2) The top level classification is ambiguous and/or doesn’t meet a key objective. (3) It is not clearly linked to other claimed uses. (4) There is no item pool associated with the classification structure, nor is it well designed to support another priority of WHO, the summary measures of population health. Also, the approval process is backwards.
Dr. Wolfson mentioned two solutions: (1) Delay the resolution to the WHO assembly by a year. (2) Go with the momentum, but be general--attach the ICIDH, in whatever form, as an annex. In Dr. Wolfson’s view the resolution would be accompanied by some description of a transparent and meaningful process for the continued evolution of the classification system. The principles that guide that evolution would be clearly indicated in the resolution.
Dr. Wolfson stated it was essential to recognize that WHO is the global organization that appropriately has the mandate for developing and promulgating standards and classifications and measurement systems in the health area. He suggested Washington could broaden the discourse. The ICIDH is being considered principally in terms of its applicability in clinical settings, but Dr. Wolfson urged the committee to remember the three concentric circles. ICIDH has potential for a much broader role. The WHO can only do what the World Health Assembly authorizes and the U.S. obviously has a voice in that process. Dr. Wolfson suggested advising the US government on appropriate behavior in that setting.
Ms. Lux pointed out that Medical classification of diagnoses does not provide all the information required for planning and management. Adding functional status to information collected on diagnosis better positions one to: predict health service utilization, length of hospitalization, level of care, outcome of rehabilitation, receipt of disability benefits, return to work, work performance and social integration.
Citing principles behind the beta-2 draft, Ms. Lux contended that ICIDH is an appropriate way to capture functional status information: (1) ICIDH-2 is about the general population, not a subgroup with disabilities. 2) ICIDH-2 systematically groups functional states associated with health conditions in a unified, standard language and framework where the description of human functioning and disability is an important component of health. (3) There is parity between mental and physical health conditions; the classification does not emphasize particulate consequences or determinants of any specific health condition. (4) The language is neutral: classification can express both positive and negative aspects of functioning. (5) The classification was not conceived with particular diagnostic categories in mind, therefore it is etiologically neutral. (6) The ICIDH-2 drafts have been written to be cross culturally applicable and use language that can be readily translated and fits a global perspective. (7) Terms found in ICIDH-2 are operationally defined and the classification was written to have life span coverage, including relevance to children. (8) An evidence-based revision was emphasized over a more opinion-based approach. Evidence includes data from literature on the use of ICIDH 1980, feedback from alpha and beta-1 testing, collaborating centers, task forces, consultants and experts including people with disabilities. (9) Environmental factors are an intrinsic feature of the conceptual model; their inclusion can increase our understanding of facilitators and barriers in relation to human functioning.
Responding to a query about the appropriateness of ICIDH-2 for infants and children, Ms. Lux noted the drafting process relied heavily on feedback from Dr. Simeonsson’s ICIDH Children and Youth Task Force, which is considering development of a separate version for children. She added that ICIDH-2, particularly at the broad level, is applicable to children and can be used, particularly in activities, to highlight most issues.
Other benefits of ICIDH-2 Ms. Lux mentioned include: (1) simplicity of language to facilitate communication across many borders, (2) flexibility in selecting the amount of detail studied, (3) focusing broadly on human functioning, not only on disability.
Ms. Lux observed that the data is used to view functional aspects of the health experience understood as an outcome of the interaction between features of the person and social and physical environmental factors. By incorporating both the medical and social models of disability, ICIDH-2 allows users to describe in an international common language both medical and rehabilitative phenomena from various perspectives. Because ICIDH-2 describes functioning in three dimensions (body, person and society) and in neutral terms, users can identify not only problems in these three dimensions, but also the absence of problems and individual strengths.
The study of disability, she commented, involves the confluence of medical care, rehabilitation, education, and community action as well as the social sciences, law and politics. It is no longer sufficient to rely on one approach to the exclusion of another. Numbers must be joined to narratives, and social theory must have a place along with health sciences in the formulation of policy. By addressing the local context of the societal experience of the health condition and associated disability, opportunities can be realized to improve the quality of life. Health policy is inseparable from social policy and innovations in social policy derived from collective experience are necessary to address the needs of local communities. This is the new world of research that the ICIDH-2 anticipates.
With regard to the use of ICIDH-2 in other countries, Ms. Lux remarked that European speech-language pathologists are interested in the classification from the perspective of having a common language. Other countries have started using ICIDH-2 in clinical settings. One example is a rehabilitation center that gathers a comprehensive, functioning profile of the client at the start of rehabilitation and updates it throughout the process. They use ICIDH-2 to track changes in the client’s functioning during rehabilitation, evaluate the cost effectiveness of their intervention, involve the client in the definition of outcome, and document the added value of different types of rehabilitative services. These benefits came after a strong effort that involved a transition from a discipline-based to a client-based management approach.
In order to fully implement the ICIDH-2 system, team members need an intimate understanding of the health care process and the way in which patients move through the particular system. As with any data collection activity, the coders need to be oriented, well trained and supported by supervisory staff until they are independent. A pilot project would be a good way of beginning a realistic implementation plan. If the decision is made to code only an activity (the dimension of ICIDH-2 that is most familiar to health care providers), the potential of ICIDH-2 and its flexibility should be communicated so that, in future stages, coding body function and participation dimensions along with environmental factors becomes routine.
Ms. Lux concluded with a quote by Harvey Cushing. Anyone involved in health care, she said, “is obligated to consider more than a diseased organ, more even than the whole person. He must view the person in his or her world.” Ms. Lux endorsed the ICIDH-2 as a tool that enables this view.
Dr. Andersson discussed ICIDH from the perspective of people in the disability community. He noted the profound impact the old ICIDH had on vocabulary globally. Most countries replaced depersonalizing foreign equivalents for “the disabled” with “persons with disabilities” or “disabled person.” The Worldwide Union Disabled People’s International, World Federation of the Deaf and Conclusion International agreed that each would have the right to represent their disability categories separately at the international level. These trends imply that constant consideration must be given to differences between and within disability categories. The reality is that every human being has at least one physical, sensory or mental impairment, limitation or inability whose degree is determined by current social demand. The definition of disability cannot be fixed permanently. The degree of health depends on what current body functions are needed and how well the external factors influencing the use of body functions can be controlled.
In the past, information about impairments or disabilities was useful only for the understanding of their pathological or epidemiological aspects. The current investigation of activities yields much more information in addition to the pathological or epidemiological aspects. For example, the investigation of hearing as an activity instead of hearing loss would yield, in addition to the extent of hearing loss among the population, the following data: the number who hear without hearing aids, the number of devices such as hearing aids, TV captioning, text telephones, the number of sign language interpreters needed by individuals. The data would be useful for ENT physicians, hearing aid manufacturers, audiologists, TV companies, telecommunication companies, and schools offering training in sign language interpreting. The investigation of walking would yield information about the degree of access to buildings and transportation that might be useful for orthopedists, rehabilitation specialists, architects and transit companies.
These strategies directly and indirectly facilitate health maintenance. Psychology and medicine repeatedly emphasize the importance of prevention in health treatment.
The development of ICIDH-2 is consistent with recent international trends, especially the UN standard rules with implementation of equalization in the opportunities for persons with disabilities and the report of the UN consultative expert meeting on international norms and standards relating to disability. They have increased the emphasis on quality in everyday opportunities of participation. This does not imply that pathology should be dismissed. Individuals should continue to receive medical treatment to arrest any decline in their mental, physical or sensory capabilities and, as successful, should become familiar with the strategies that can enhance their involvement in everyday activities.
This shift may expect a higher degree of teamwork among service providers, government and industrialists to find ways to develop universal designs that remove barriers in existing and new architecture, technological and transportation facilities, and mass communication. The government and the business world and foundations may have to develop a new balance in their grants to medicine, rehabilitation and removal of barriers.
Dr. Wolfson clarified that questions for the beta-2 testing had been distributed to WHO collaborating centers. Individuals and small groups with some expertise and health-related focus met to discuss queries. Some training and trial coding was included. About 20 participants subsequently met in Ottawa for two days to pool experiences and observations.
Dr. Ruggieri recounted that ICD-9 was derived in the early 1800s from the London Bills of Mortality and was never designed or rigorously tested as a clinical representation system. Clinical content coverage studies over the last decade point to deficiencies.
The critical question, Dr. Wolfson asserted, is just what WHO in Geneva wants to circulate in draft form and present to the World Health Assembly? He was against adoption in ICIDH-2’s current form. The draft was too concrete, he cautioned. Ideas might be “frozen in” that would take a long time to amend.
The panel was asked how long it would be before ICIDH could be used to code function status on administrative records. Given health care professionals trained to code, Ms. Lux responded, a pilot focused on using a finite number of codes to answer a specific question could be rolled out in a couple years. She emphasized that with ICIDH-2, it is the user that needs to identify the issues, the questions--then others can build from this large collection of codes. Dr. Iezzoni remarked that diagnosis coding is done by physicians and questioned if they were ready for these concepts. Physicians in rehabilitation and other sectors do this every day, Ms. Lux replied. Others might not yet think of functioning in diagnosis, but they could be convinced and educated.
Dr. Wolfson explained that his comments had been principally at the top level of classification. There were a myriad of items down at the “leaf level”–many good ones, he added, and some he still found vague or inappropriate. Dr. Wolfson indicated he was torn between building momentum and “getting it right.” The gap, he said, is so huge between what is being discussed and the clinical information routinely collected--the almost complete absence of non-clinical descriptions of how people function--that getting started is a priority. He told an anecdote about a Ph.D. that examined how discharge nurses in hospitals and intake nurses in nursing homes quoted the same individuals’ responses to identical questions with substantial differences.
Dr. Andersson observed that in discussions about coding one needed to understand that lawyers want a precise definition of disabilities. He told how The Organization of Americas developed a policy that deletes discrimination against individuals with disability. They met for two days and their whole discussion was about the definition of disabilities. In coding, one limits oneself to research. When what is produced moves to different countries, they consider how they define disabilities. In South Africa, the government has refused to accept the words disability or impairment. “Activities” and “participation” are used in counting the census. Dr. Andersson observed it is interesting to see how they dealt with this issue.
Asked how long ICIDH-2 had been in development, Ms. Lux responded in the early 1990s the need was realized for a revision based on both changes in health care and how disability was being viewed and defined. The effort reached full steam around 1995.
Dr. Iezzoni summarized: there is a WHO imperative for a resolution. Field information about how this is working is still being collected. Key groups that might have valuable input have yet to be heard. He asked if anyone, knowing the WHO process, envisioned that, if they adopted a very general resolution supporting ICIDH-2, there could be timely and significant revisions? Dr. Placek, who attended the heads of ICIDH meeting in Geneva, reported that WHO acknowledges that there will be a coordination and maintenance procedure similar to ICD-10's with annual changes allowed, encouraged and needed. Nobody has the energy to go through this, even within the next 10 years.
Dr. Wolfson questioned whether the envisaged process of change is only incremental or one that could address fundamental issues. He expressed concern that, if a resolution goes forward, the scope will be very incremental.
Dr. Placek discussed a NCHS sponsored three city rollout of a training school, Code IDH-2. Schools were held in Minnesota, Pomona and Hyattsville. Around 30 persons attended and some 135 WHO cases or scenarios were coded.
Code IDH-2 is a training tool developed collaboratively between NCHS and CDC, Western U., and WHO. The courseware includes an overview of ICIDH-2, the taxonomy, and opportunities to code with feedback. It is geared for prior ICIDH users, but some participants had no experience with ICIDH. Hot links go to other ICIDH sites. One section answers frequently asked questions: what is important about code, the link between impairment and ICD, the difference between activity and participation, the difference between the two-digit and four-digit versions? Ten learning points guide through: finding and qualifying an item, differentiating illness and function, the differences of a label, the difference between body function and body structure, differentiating types of activities, identifying assumptions about activities, how participation affects classification, the environment, and the use of barriers and facilitators to describe the effective function. The learning points help students begin coding practice cases and explain the reasons to code a particular way.
Feedback indicates the ability to successfully use code IDH-2 is dependent on prior exposure to ICIDH and computer experience, although some students with neither managed to get through the courseware in a couple hours and begin coding WHO cases.
Code IDH-2 is available on the Internet. In the first month there were about 2,500 hits on the site and about 55 people went through the courseware.
Dr. Hendershot described how training and testing were conducted during the two-day conference. WHO ICIDH collaborating centers and task forces are doing eight test protocols. Three mandatory protocols were conducted during the rollout conference: linguistic analysis, consensus conferences on basic questions and coding cases. Groups also did an activity/participation study designed by Canadian Institute of Health Information.
Participants were experienced professionals, predominantly female, average age 46-- ranging between 26 to over 60. Most were in physical health fields; the majority were in rehabilitation therapy nursing. Their average years of professional experience was 22.
Dr. Hendershot summarized the consensus conferences. There was a strong, positive consensus that ICIDH-2 was needed in the participants’ specialties. Reasons given emphasized the need for standardization and nomenclature and included the extra medical dimensions of disability.
A wide range of potential applications were mentioned within specialties. Categories of uses included assessment, research, communication, education, and health care and service delivery. All groups said ICIDH-2 would enhance communications among professions; some mentioned difficulties in communicating as a patient is “passed off” from one professional to another and emphasized their need for a universal language. Opinions varied on the utility of ICIDH-2 for administrative purposes; groups that were doubtful pointed to barriers in the present system.
There was a strong, positive consensus that ICIDH-2 is a meaningful classification of functioning disability. Some noted that, while the detail of classification makes it useful in many applications, this also makes learning and reliability difficult. Unlike Canada, there was strong positive consensus in the United States that it is useful to differentiate between body structure and body function and also between activity and participation. Dr. Hendershot acknowledged that the question may have been phrased differently. “Is it useful to differentiate between activity and participation?” rather than, “Does this particular attempt to make that distinction work for you?”
Participants indicated that the distinction between activity and participation increased their understanding of the relationship between dimensions of functioning disability and was useful in planning interventions. They said having the distinction made in the classification is useful in deciding the approach to a treatment sequence.
Some participants suggested adding the rate at which people can perform activities as a criterion for functioning. Including the safety with which a person can perform an activity in evaluating functional value was also recommended. Other comments on implementation of classification included developing a short measurement instrument and coding rules and standards that can overcome resistance and inertia in the existing concepts and practices.
Some 25 standard cases developed by WHO, randomized within groups of five, were assigned to participants for coding. Every case was coded by a number of people. Results will be combined with information from other test sites and analyzed by WHO. Preliminary analysis of the responses indicate how they felt about the coding effort. The average ease was 3.1 (rated one to five with one being easy and five difficult). The average meaningfulness was 2.3. The average time in minutes to code the cases was 24. Confidence in coding body function averaged 3.7, body structure 3.7, activity 3.8., environment, 3.7. Ease of use: body function 2.5, body structure 2.6, activity 2.6, participation 2.8, environment 2.6. Participation received a slightly higher score indicating less ease of use. Meaningfulness of dimensions, based on coding experience: body function 1.8, body structure 2.1, activity 1.7, participation, 1.7, environment 1.8. Scores for meaningfulness are higher than scores for ease of use and difficulty, suggesting participants find this a meaningful way of thinking about things, even though they had some difficulty assigning codes.
Dr. Hendershot acknowledged that selection bias might be present in these results, since participants were very interested in measurement and classification issues, or at least open to new ways of thinking. Also, this group was not given all of the activities and participation questions, in order to make time for the A/P study. He agreed that it was desirable to sample a more representative group of rank and file health care workers, but noted a lack of resources. Concern was expressed about feedback to WHO based on this kind of a sample and Dr. Hendershot indicated that the participants would be identified as volunteers from the professions that typically work in this area. The methodology used for the consensus groups was also discussed and it was observed that the level of objectivity and detachment of a moderator was a factor in an overall evaluation of a focus group.
Ms. Hawley presented a concerted effort by members of the Minnesota Chapter of the American Physical Therapy Association to study the feasibility of using ICIDH as a tool to measure outcomes in a more meaningful way. Six years ago they focused on using ICIDH to classify the consequences of disease, injury or other health conditions at the various levels. As a chapter, they have looked most closely at the level of the person: the activity and activity limitations section.
Ms. Hawley strongly advocated capturing functional status information on health care claims. The more accurate the information, she asserted, the more appropriately the claim can be handled. Physical therapists work in a disablement model and ICIDH can capture that functional information. For a reimbursement system to be meaningful, Ms. Hawley noted, it must capture information that relates to the condition being studied. ICIDH can routinely capture information important to everyone in health care.
Currently only ICD-9 information is submitted on physical therapy health care claims. A patient who has a CBA is quoted with that medical diagnosis. Some patients with CBAs have difficulty with gait. Some do not. Ms. Hawley commented that if a physical therapist could code gait dysfunction the insurance company’s view would be more accurate and complete.
Ms. Hawley remarked that a challenge to successful implementation of ICIDH is the “blurring” of the activity and participation dimensions; she contends this is not insurmountable, but will require discussion and training. Ms. Hawley also conceded that the multiplicity of codes in the classification system could seem overwhelming. However, she compared ICIDH with English--both being universal languages--and emphasized the need for seamless communications within health care. In Minnesota, she said, physical therapists were breaking that code down into manageable pieces used in everyday clinical practice.
Ms. Hawley noted that the chapters Pediatric Outcomes Workgroup questioned the use of ICIDH but, after studying the activity and participation sections, consider it appropriate and useful. She encouraged continuing to use the Internet for training.
The chapter intends to incorporate ICIDH into the Minnesota Outcome Study and use it to capture the activity and activity limitation section. Practitioners hope to use this information in their communications with insurers. Ms. Hawley gave the example of calling for pre- authorization of a person who was being seen post anterior cruciate ligament surgery and receiving authorization for only one visit. The more precisely the patient can be imaged, the more appropriate the physical therapy intervention.
Ms. Hawley asserted that this ICIDH is much more appropriate than ICD-9 for looking at best practices and improving efficiency and effectiveness of care. The chapter will use this new information to dialogue with insurers and policy makers at the state level.
Asked if ICIDH had been used for outcomes with multiple assessments, Ms. Hawley responded that they were drafting and beta testing. She added they hoped to have the MINOS study done within six months and roll it out soon after that. The information will be on an additional form. The physical therapist will use Microsoft Access for processing. She said she was not aware of other state chapters doing similar things. She noted that The American Association of Physical Therapy remains neutral and The Guide to Physical Therapist Practice is based on the Nagy model.
Dr. Wallace introduced a comprehensive, culturally inclusive assessment system, the Reliable Assessment Inventory of Neural Behavioral Organization, which is now being standardized. She has been involved with ICIDH-2 since it became available on the Internet and has participated in five WHO ICIDH-2 related activities including training and served as a coordinator for ASHA in case coding. Developed independently of ICIDH-2, there are conceptual and design similarities which make RAINBO a practical method for implementing ICIDH-2.
RAINBO is comprised of a comprehensive intake summary sheet, a functional outcomes quality of life measure and 10 test modules. It provides information about profiles of performance for ICIDH-2 body parts, structure and function dimensions and the ICIDH-2 activity level dimension for the full range of ICIDH-2 speech language pathology discipline specific domains. RAINBO system also includes an interdisciplinary functional outcomes quality of life measure for evaluation of the full range of ICIDH-2 domains included under the participation dimension.
Dr. Wallace described how RAINBO’s user-friendly functional outcomes quality of life measure is self-made by the person and major care giver. Special features (pictographic materials in large print) accompany the measure in order to facilitate full participation and input during the rating process by the impaired person. Follow-up interdisciplinary and/or trans-disciplinary team assessment is conducted. Rehabilitation team members observe performance in selected areas of concern to the person and care giver.
RAINBO scoring systems are based on a five-point range identical to ICIDH-2 and scores are easily transferred to ICIDH-2 classification in terms of performance level, need for and type of assistance. RAINBO allow the tester to rate performance under non-assisted and assisted testing conditions. Pilot testing of RAINBO clinical assessment protocols is determining how to best facilitate the recording, documenting and tracking case performance across the ICIDH- 2, B, body; A, activity; and P, participation dimensions.
Clinicians complete a form organized according to standard assessment report format using standard speech-language pathology categories. ICIDH-2 codes and standard speech language pathology categories are provided on the protocol sheets so clinicians associate ICIDH-2 codes with customary terminology. Clinicians circle the number that best represents the person’s performance for a given category. Technical support personnel enter circled codes into the computer database.
The protocols provide space to record information about target schools or rehabilitation goals, Dr. Wallace noted. This facilitates decisions about projected length of stay, treatment as a function of initial B, A and P profiles, and determination of the most cost effective and fruitful areas of treatment as a function of case profile.
Dr. Wallace remarked that assessment: (1) Provides information about deficits and, more importantly, strengths that can be used as springboards during treatment. It measures efficacy or success of treatment and enables detection of needed changes in treatment direction. (2) Facilitates communication within and across disciplines as clinical cases move across the continuum of care, promoting seamless continuity of care that is personalized, meaningful, functional and cost effective. (3) Carefully describes the subjects (enhancing the applicability of research finding) and provides a framework for understanding clinical management from the participation level to the finer levels--body part function, structure and activity.
The ICIDH-2 provides a solid, conceptual framework for clinical assessment and strong support for rehabilitation service providers, clinicians, researchers and teachers. It provides a means to assess and discuss issues of ability, disability and inclusion in the equitable individualized and culturally appropriate manner that embraces all races, languages and nations.
Dr. Wallace concluded that ICIDH-2 “pulls it all together” and is very helpful in terms of everything she does as a clinician, researcher, teacher. She discussed using it in the assessment of traumatic brain injuries and in functional outcomes studies with people who have had strokes and cauder fascia or language involvement. The speech pathologists at a rehabilitation hospital also use this system. Dr. Wallace intends to use it in the outpatient clinic.
· Discussion
Asked if rank-and-file physical therapists would view ICIDH as a useful clinical tool or another administrative burden, Ms. Hawley replied that one had to be aware of ICIDH’s utility in tracking patient outcomes or changes over time in order to use it. When physical therapists call an insurance company, she said, they want to have that hard data--but they also want it for personal performance improvement.
Participants were asked what they had learned from using ICIDH--what component or core element was most ready for prime time. The activities section, Ms. Hawley responded, but within that, MDS is used in skilled nursing facilities to look at specific areas meaningful for people at the end of life--walking, ADLs. How a component is used depends upon the population. The orthopedic section of the self-report form fits their needs; the rehabilitation hospital’s section is shaped differently. All the chapters within the dimension have utility, germane to the population.
Dr. Wallace told about a person who had a stroke, then severe lopraxia, oryngiapraxia, respiratory praxia. He “started off really severe at the body and activity level, improved a bit in therapy--but participation remained quite low.” He and his wife were very depressed. And then the care giver learned ways to give a feeling of more natural communication, and the couple became a lot happier. They didn’t know why, but they did. And it was all about care giver education and the impact that had on the participation level--“on having something to give.” Dr. Wallace said this was the most interesting discovery of her career, one she never would have realized had she not had this system and “been able to chat.”
Dr. Placek observed a wide bias: ICIDH was originally designed to set off activities, but the social participation and environment sections have developed “nicely” and social participation is “one of the bright spots.”
Ms. Hawley observed that, as a patient is evaluated in physical therapy, functional goals are routinely written. They have changed from impairment level goals to functional goals, but they need to be brought a step further. Work is concentrated at the activity section, she observed, but it only has meaning when the patient has meaning in his life.
Ms. Wells presented Family Voices, a national grassroots network of families and friends speaking on behalf of children with special needs. Ms. Wells discussed issues families think about in looking at the health care system, how different families view their children and their special needs, and complexities that she sees in the process being considered.
She described a study conducted by Brandeis University and FV that profiled the demographics of the child. Most families said their child had a number of special needs or conditions. Conditions were not exclusive, but overlapped. Many children who had one issue with functioning or impairment, had others as well.
Ms. Wells noted that these families were well connected to their systems: most had health insurance, over a third had secondary insurance. They received many kinds of services: special education services in school, Title V, children with special health care needs services, SSI, state department of mental health or retardation or developmental services and the Department of Mental Health. Over 20 percent went to the primary care or specialty provider more than eight times a year. Almost half of them had been in the emergency room in the past year; 40 percent had been hospitalized.
However, when asked how they saw their child’s overall health, many families gauged their child’s health as good to excellent. Less than 20 percent rated fair or poor. Families said their children were quite healthy, but on a form in a doctor’s office they looked enormously complex. Ms. Wells cautioned everyone to consider who inputs the information and how it is collected.
While viewing their children as relatively healthy, the vast majority of families ranked their child’s disability or special health condition in the seven to ten category. Only 35 percent said their child’s health condition was stable. Ms. Wells emphasized the number and kinds of services in the system children are not getting at the level that, at least the family, believes they need. Families feel quite stressed, Ms. Wells emphasized. They are denied either by their insurance or the complexity between the school system and the providers. “Any system,” she said, “that better measures what is happening and gives enhanced data on outcomes would be useful.”
Ms. Wells noted that nearly 20 percent of these families spend 20 or more hours a week taking care of their child. Some 60 percent of the mothers surveyed reported an impact on their paid employment; either cutting back or quitting to take care of their child. Some 66 percent of the families reported an impact on finances. Functional assessment, Ms. Wells asserted, needs to consider the family as well as the child. She presented the perspective of a child in the context of the family and how ICIDH might measure stressors on them as a whole--not just how that child, but how the whole family, is functioning.
Ms. Wells cautioned anyone asking questions or making judgment based on information collected to consider that a provider often only sees the family and child in the context of the service--it is difficult to envision the whole family experience. Families often don’t know why a question is asked, or have a shared sense of context, and can feel judged which affects their ability to answer. She raised the question of whether or not families would have an opportunity to read the record and clarify perceptions.
Ms. Wells concluded that families surveyed clearly felt the need for better communications. The complexity of the system left them being treated by different people in different places, with few ways in which information was exchanged or merged. Families find all parts of the system complicated. FV is committed to the idea that the voices of families ought to be part of discussions about anything that affects families of children with special needs.
Participants thanked Ms. Wells for her insights and noted that the illustrations she presented were mostly codeable with ICIDH-2. Dr. Newacheck pointed out that Ms. Wells had demonstrated that the impact of disability goes beyond the individual; for children, it extends to the whole family. He emphasized that ICIDH is focused on the individual and cautioned that a major aspect of childhood disability is not being captured.
Mr. Griss observed that everyone had witnessed a demonstration of how ICIDH-2 could capture Ms. Wells’ data and that nobody expected this conceptual framework to be incorporated soon in health policy. He suggested that it would be useful to work out details while applying this tool to some specific functions in the health care system and, with that momentum, discover many other uses. The value of ICIDH-2, he reflected, seemed to be that it had so many potential uses that are not developed. Meanwhile, he noted, the health care system gets bogged down with growing co-modification of services available only to those who could afford them, while payers try to limit their liability.
Mr. Griss noted that day was the deadline for submitting comments on Medicare coverage criteria. Benefits are clearly specified in the statute, he noted, but Medicare wants the right to say certain benefits should not be paid for certain subgroups within the Medicare population if there is not scientific evidence of a medical benefit. The idea of capturing in an administrative record changes in function at the participation or activity level was not addressed. The regulations that HCFA is in the process of formalizing will affect coverage criteria for an entitlement to health care; strategic health care issues are being discussed. They should be the focus of testing. Mr. Griss stressed that the question is not: How does coding work for this new vocabulary? But, How do you address the specific functions of coverage criteria, of assessment of patients’ needs? Parents want more things that work, he reiterated. The providers, the payers want to know what really works--and that information is not being captured to justify medical necessity decisions or decisions in coverage criteria.
HCFA , concerned about cost containment, uses power derived from the statutory words, “reasonable and necessary,” to create arbitrary definitions of particular services. Durable medical equipment, for example, has to be “something used in the home,” or “only of use to persons who don’t have certain disabilities.” Augmentative communication devices are a prosthetic device that HCFA declares “just a convenience item,” because speech is not a covered benefit. Mr. Griss pointed out that Medicare paid for speech services, then asked, "What would it take for a person without certain anatomical features to benefit from speech services?"
A method of capturing functional status in meaningful ways is needed. The concept of functional equivalent is a powerful tool, Mr. Griss concluded. With a way of measuring function for the total population, one would be able to say that certain benefits are clearly available to people without disabilities or people with some other disabilities. And, for people with a particular disability or functional status, it may be necessary to provide other services to get the equality of outcome. Mr. Griss stated that he was hopeful that the ICIDH-2 will provide those elements as a practical tool for measuring change.
What needs to be measured are changes in health status. Mr. Griss urged looking beyond the medical model and changes at the body system level and going to the activity level and on to the participation level. Improving peoples’ functioning is what health is all about; that is what health care policy needs to do.
Dr. Crews stated that the value of ICIDH-2 as a classification system is its ability to both sort out the domains of human experience (body function, activity, participation and environment) and to integrate and portray these complex dimensions. As a conceptual framework, ICIDH-2 windows and reveals relationships of human experience: activity limitations may lead participation restriction, for example, or the environment may restrict participation. ICIDH-2 is relevant to the lives of people with disabilities; it shows relationships among the experience of disability, interventions and public policy.
ICIDH provides a framework and language that allow for communication across disciplines. Dr. Crews noted how multiple disciplines are engaging ICIDH and talking broadly across disciplines. ICIDH-2 can be successfully employed as a framework for outcomes research and it can be used prospectively in a research design or retrospectively as an analytical framework.
ICIDH creates a method to link broad public policy with disability policy. Dr. Crews posed the question: How does a vital accessible public transportation system lead to greater opportunities for employment? He told how, at public hearings, the blind said routinely that they could get jobs, but they could not get to their jobs. And the Commission for the Blind routinely responded they had no authority in transportation. “That is your problem, not our problem.” When we really look at public policy, Dr. Crews asserted, we recognize things are related. The environment is related to participation measures: people who only respond in one domain, like improving activity, are not doing their job if they will not advocate for consumers in the broader environment.
Dr. Crews discussed using ICIDH as an epidemiological framework to talk about aging and vision impairment. Disease is a poor predictor of function or outcome; a diagnosis is good, but limited, information. Body function domain provides more useful knowledge for rehabilitation. Activity limitations that may be associated with low vision, for example, include reading books, newspapers and bills; driving; walking; going up steps; street crossings and identifying medicines.
Participation measures or restrictions may be things like getting together with friends or relatives, valued activities in the community, shopping, going to church or synagogue. Environmentally influences that might affect somebody older and visually impaired include large print, signs and labels, public transportation, the weather and the presence or absence of sidewalks in the community.
Dr. Crews discussed data from the 1994 supplement on aging detailing that people with vision impairment have a higher rate of other health conditions and more activity limitations, but seem less restricted in terms of participation. The specific questions about participation, however, capture only a narrow view and are framed in a way that elicits misleading responses. Only considering comorbidity and activity limitation presents a similarly poor picture of this group. Dr. Crews observed that it would be very easy to say, “They are doing all right,” when what is needed are underlying questions and answers.
Dr. Seltser described himself as a confirmed, born-again ICIDH-er and said that, if he were to be identified with any single ongoing activity, he would want it to be having helped introduce the conceptual framework of ICIDH into the literature and practice. He stated that ICIDH-2 is the first and only document he ever saw that really defines health. If he was still the Dean of the School of Public Health, Dr. Seltser said the first thing he would do is develop a required course in all of the health professional schools which redefines the concept of health in ICIDH terms.
He stated that the “so-called” health care delivery system did not need reshaping; it needs reengineering. The disease model oriented system is a medical care system second to none in terms of delivering medical services, but a health care “non-delivery, non-system.“
Dr. Seltser discussed his role as an elderly consumer of the health care delivery system, where each encounter of the health system drives home the need for some sort of functional assessment to help him get through the problems that he has as an individual. He noted the difference between medicine as it is practiced today and as he knew and practiced it 50 years ago is that no one any longer pays much attention to history.
He remarked that there are few reasons why anyone should do an annual physical, but there is a very good reason why, with an adequate functional assessment tool, it could be self- administered. It could also be computerized and used as a screening instrument to collect data serially on everyone paying for “so-called” health insurance. The result, he suggested, would be “What we used to have in the old days when everybody was being treated in hospitals--a medical record that you could use to track people and help them.”
This is an age in which we are enamored of technological advances, Dr Seltser remarked, and we had almost forgotten the importance of how a person functions and determining the significant elements in that person’s life. He reflected that people learn to live with many of the functional problems they have; one prioritizes and tries to maximize abilities to live with what one has. As one grows older, this gets more and more important. A health care delivery system, he noted, should help people make these decisions.
Dr. Seltser encouraged developing systematically the kind of data that will enable society to help make such decisions. The need, he said, was for a series of functional assessment tools that provide everyone with an adequate individualized functional assessment similar to that which the Supreme Court mandated for children in the Zeboli decision where Social Security had to revamp its determination process. The task force recommended in 1990 a strategy for improving the scientific basis of disability determination which moves beyond the traditional medical model focused on disability and impairment to emphasize functionally oriented assessment procedures that concentrate on abilities.
Four lead agencies of the Public Health Service were designated to promote: (1) a coordinated research program on utilization of functional measures in disability determination process, (2) a research agenda on improving the precision of measurement of impairments and on the relationship between the level of impairment and functional status, (3) an encouragement and facilitation of the education of health professionals on functional capacity and disability determination, and (4) a coordination and standardization of the use of classification schemes for data on persons with disability. The last was assigned to the CDC and NCHS, which, Dr. Seltser said, is the only recommendation that has been systematically implemented.
Encounter forms are the single most important driving force behind how medical care is provided today, Dr. Seltser concluded. And until functional assessment actually is part of that form, (1) the reimbursement system will never be linked rationally to providing health care, and (2) most importantly, care cannot be assessed in a way that enables both an evaluation of the effectiveness of treatment and the garnering of information about resources needed to provide care people really need.
Dr. Seltser encouraged thinking about the ICIDH as a work in progress, ready for prime time. Noting this is an era where there is rationing of medical care and decisions are not being made on a basis that has any relevance to the consumer, he advocated ICIDH as a system that can reintroduce the one thing absolutely lacking in our health care delivery system today: the element of compassion. Compassion is a sympathetic consciousness of another’s distress, together with a desire to alleviate. The extent to which one can identify and assess the distress of an individual depends on the kind of data collected about them. He urged everyone to consider what might be realized with a uniform classification system that was applied by social workers, physical therapists, and patients themselves. “What should I be able to do? What can I do that I should be able to do? And what can’t I do that I should be able to do?”
Dr. Iezzoni thanked the panelists, acknowledging that no one, knowing this was a meeting on coding classification and functional status, would have imagined hearing such inspirational speakers. She invited the clinicians in the room to come to the table and share their thoughts about assigning codes while avoiding labeling, which in the past skewed participation.
Ms. Hawley acknowledged that there can be a lot of bias if a clinician does the rating. She noted perception is reality: a clinician may see the person do something, yet if that person decides he can’t do that in his role in society, then, “he is not doing it.” She said the Minnesota chapter structured a self-report form. The family fills out the form for the pediatric population.
Dr. Ruggieri noted that Frederick Wolf and Ted Pinkus published a landmark work demonstrating the importance of patient self-report data on predicting outcomes. Traditional physiological measures were not as good. He urged that a decision be made on whether ICIDH would capture the conceptual needs or intent of the patient.
Dr. Wallace identified how, with RAINBO, activities and participation are viewed on three levels. Level one deals with basics that everybody is or should be able to do--transfer, toileting. Level two gets into grooming and other things everybody does in different ways. Level three is recreation, employment, actions with even more latitude for individualization. People do the separating themselves; they say which categories are important, especially at level three. Then, from a professional perspective, providers look for ways to improve on selected tasks. Environmental factors are also very important, Dr. Wallace pointed out. And, since there are only so many observations a provider can make, care givers and family give important input.
Dr. Threats stated that a concern with labeling is who is going to make certain ratings. He explained that, in the field trials, one of the questions for each level was, who should judge it? He noted the speech pathologists believed that the patient is probably best to judge the participation level, and saw themselves as trained for and adept at the body function level. Dr. Threats suggested routinely collecting both. “I give you what I think, you give me what you think, using the same language--That rarely happens in medicine or the therapies.”
Dr. Suzy Stark observed that people who have had a disability for a long time can predict their functional performance at the participation level, while somebody encountering a new level of disability could benefit from a professional’s rating.
Noting there were still barriers to thinking about using ICIDH on the claim, Dr. Iezzoni asked Dr. Seltzer what would be a realistic first step for the committee to recommend. First, Dr. Seltser replied, recognize that the old ICIDH no longer exists. The new ICIDH-2 adequately takes care of concerns that the Institute of Medicine committee expressed in 1991. There should no longer be a conceptual concern with holding on to Nagy and forgetting about WHO. ICIDH-2 is not a threat to anyone. All the tools can be cross-walked with ICIDH-2. Groups can use their own functional assessment tools.
The problem with physicians, Dr Seltser advised, will only be counteracted when the system requires physicians to use a functional assessment code in order to get reimbursed--and makes it easy to do so rather than force doctors to learn new systems.
Responding to concern about the effort implementation would require, Dr. Seltser suggested a marketing strategy and drew upon development of the human genome as an example. A selling point for individualized functional assessments is that, ten years from now when the drug companies go after which genes are going to be most marketable, everything will be in the records. ICIDH is economically sound.
Mr. Griss suggested identifying demonstration projects where managed care plans or clinics are capturing information that has utility, providing a more flexible benefit package and demonstrating changes in enrollees’ health status. Opportunities exist to excite consumers about a functional assessment tool that allows them to start identifying functional problems they can bring to the health care system. Insurers will resist it; Mr. Griss foresaw. They have very strict definitions of medical necessity. That will be the battle. But if the goal is to improve peoples’ functioning, non-clinical interventions are likely to be most cost effective. Genetic engineering and new drugs are extremely expensive. ICIDH-2 has the potential to reorient the health care system.
Noting the public’s growing awareness of Alzheimer’s Disease as a pervasive problem and the need for some sort of functional assessment to determine early signs, Dr. Seltser suggested that collecting cognitive functioning as a routine bit of information at the time of encounter might be a way of inexpensively screening for Alzheimer’s.
It was observed that, in any application, every encounter would not require the same amount of effort or time. As one works with the process, efficiency increases. People who had evaluated patients were able to do it in five to ten minutes. In a busy primary care practice, one quickly checks a box or circles a code.
Dr. Threats commented that the American College of Rheumatology has stipulated criteria for declaring improvement in a rheumatic disease; one is to show improvement in a “validated health assessment questionnaire.” He suggested another pilot approach could be to code those health assessment questionnaires and request some pilot studies as part of the routine practice. Dr. Iezzoni stated that cardiologists, rheumatologists and pediatricians would be sympathetic decision groups to start with.
Dr. Wolfson acknowledged that, at the level of general principle, there seemed to be virtual unanimity and concurred with including some type of functional assessment on the encounter form. But just because there is a consensus does not mean that ICIDH is the proper mechanism, he added and again questioned its suitability. Dr. Seltser stated he would settle for an item on the form verifying that a functional assessment had been done. Something has to be done, he reiterated, to reverse physicians’ dismissing functional assessments as unimportant because the ICD is the driving force. The current encounter form perpetuates the disease model. Dr. Seltser urged that this be addressed as part of the objectives for the year 2010. Dr. Iezzoni responded: “So you put it in all medical school curricula,” to which Dr. Seltser agreed.
Dr. Wallace commented that the discussion had been about how challenging it might be to code, but in the real world, providers were asked to evaluate a patient. She advocated forms that relieved clinicians from writing narratives, but had them simply circle under orientation any relevant ICIDH-2 codes labeled the way they are used to seeing them. Let them use whatever tool they want to evaluate the patient across typical domains, but instead of doing a cumbersome narrative, simply circle. At the first visit, she explains the participation form to patients so that they could bring back the completed form on the second visit. Physicians could include a simplified version with the other form they send everyone, and then just look at that information. Providers working together can code the patient accurately. “No one has to do it all; but we do need to work together.”
The hearing was recessed at 4:30 p.m. to be reconvened the following morning.
Dr. Iezzoni reconvened the hearing at 9:05 a.m. on July 18, 2000; acknowledged the previous days presentations and dialogues; and initiated introductions of the participants. Dr. Ustun then made his presentation.
Dr. Ustun observed that having a nation seriously considering using a classification system for reporting the function status on administrative records was a milestone in the revision process. He reported that ICIDH has been revised over the last decade with considerable international participation. Over 80 countries commented on the draft. Some 42 countries and various NGOs, governmental organizations, intergovernmental organizations, scientists, clinicians, and people with disabilities participated in field-testing. ICIDH-2 was put on the Internet in English and five other languages. Anyone can access the site; more than 4,000 comments have been collected.
Dr. Ustun emphasized the focus on the revision process being guided by taxonomic guidelines and other scientific principles. Practical utility was the touchstone: how easily, effectively and ethically the classifications worked in real life. Focus in this test and retest phase is on : (1) reliability, (2) validity--does it predict, explain or account as expected, (3) cross-country comparability, and (4) its usefulness as an identifier of clinical outcomes for service provision.
Dr. Ustun discussed changes in the classification’s key constructs. The first dimension, body functions and structures, originally was impairment. The second dimension, formerly disabled, is called activities. This is about the whole person, but actually activity is what can be observed. The third level, participation, was formerly handicap. It was changed into a positive concept to identify restricted areas of participation so specific interventions can be realized. Each dimension has its domains and passes, and at the end, a uniform qualifier is an improvement over the former ICIDH. This qualifier has both positive and negative ends. It is a five-point scale between no and total difficulty, with a midpoint called moderate on each side, and a mild and severe cut point.
Revision began in 1990. The first revision, in 1993, deleted homosexuality from the list of impairments, disabilities and handicaps. Next was a classification with definitions and some taxonomy rules on how categories could be defined. The draft language was centered in measurable constructs that lend themselves to questionnaires, surveys, clinical inquiries and testing. Numerous options were tested by applying them in activities or in body function and collecting the pros and cons. Options have been reduced in number, and different ways people could use it have been identified and widely tested.
Dr. Ustun described polarizations faced in revising earlier phases: (1) the medical and social models of disabilities, (2) two versions of ideology among people with disabilities-- a minority model with different groups’ needs and rights and a universal view that everybody might become disabled or is disabled in one way or another, (3) tension between global classification and local versions. Focusing on the health condition (a disease, disorder, some would add pregnancy, aging, stress), ICIDH’s conceptual transformation took the form of a multiple web: body functions, activities, participation plus environmental and personal factors.
Dr. Ustun emphasized that ICIDH-2 is: (1) not merely a medical or social, but an integrated, model, (2) an interactive model, not progressive linear where one fatalistically progresses from impairment to handicaps, (3) etiologically neutral; it doesn't take a health condition and progressively arrive at a disability pattern attached to it, but maintains parity, (4) an inclusive model: it involves environment and person, and does not focus on Western concepts, but tries to seek cultural applicability that is basic human functioning and universal, in a sense, across cultures. (5) an operational classification that spans across the life of an individual, not only for adults, but also children, (6) a conciliatory approach to bridge medical and social models, both are needed to relieve impairments, go into or remove barriers for participation restrictions.
In January the executive board will discuss the issue. Dr. Ustun expects that WHO will approve ICIDH by 2001 May World Health Assembly, with an executive board resolution to gather unified data from the member states reporting on the health systems of the countries.
Responding to questions, Dr. Ustun stated that, with ICIDH, there is “no correct score.” This framework is to be reported by providers or consumers. Both perspectives are beneficial. At times there is a discrepancy, but usually there is concordance as well. He strongly recommended identifying sources.
Dr. Ustun commented that testing is underway for reliability and validity. Studies have been done in 22 countries, and four papers are in the pipeline. By the Madrid meeting in May, the cross-cultural research will be available to collaborating centers for their recommendation. It will also be available on the Internet.
Dr. Ustun offered the Tower of Babel as an analogy of the difficulty of the mission. He pointed out that the revision process has been open to everyone and that consensus has increased with successive versions. He affirmed a significant proportion of users will be happy with the common standard. Even with ICD, Americans have a CM, , Australians have an AM, the Brits have an unspoken BM and Canadians are planning another modification, he reflected. Everybody takes the structure and modifies it to their needs. The intent is to make the driving force behind these modifications be the update and revision of the classification. The goal was not a static, frozen product, but a process and standard procedure with an update mechanism, different versions, and fluid comparability.
Dr. Ustun explained that the classification is not putting a person into a box. Several boxes identify a summary profile. For each box, the analogy is a measure that can be standardized along the three basic dimensions: body functions, activities, and participation, and each of these has salient domains around which these rulers are set. Administrative records would have at least 15-18 codes, he stated. The number depends on the parsimony users agreed upon.
Dr. Ustun was asked if WHO would have ICIDH appropriately canvassed as a standard. ISO will cover the ISO codes and procedures for the ICIDH, he said, and the basic approach of ISO in terms of terminology and harmonization of informational terminology has already been applied at the basic terms level of ICIDH. The terminology branch of WHO would formally register with ISO in a cost effective way.
Queried about reported confusion over classifications, Dr. Ustun stated “a gameful exercise,” pile sorting, showed the shortcoming of ICIDH-1--the natural taxonomy of people to sort by gut feeling doesn't suffice to make a proper classification. Operational definitions are necessary. ICIDH-2 provides 92 terms fixed across cultures and allows each culture to add 50 terms with cultural relevance. Dr. Ustun pointed out that real life reliability studies (for example the checklist for WHODAS) recorded a concordance rate as percentage corrected for chance less than 0.2. That, he clarified, is the current level. With ICIDH-2, precision error liability increased by providing operational definitions as to how to measure, what to measure, and how to report measurements.
Asked what it would take for primary care doctors in the U.S. to use the ICIDH Dr. Ustun noted the work that Wonker has developed and evidence from Dartmouth Medical Group that group charts have been used in primary care. He also mentioned a primary care study he conducted that indicated that physicians' assessment of case mix relied more on functioning than specific symptoms of mental illness. He suggested ICIDH was clinician friendly but would take time. It is being tested in Italy where primary care physicians are using the checklist.
Dr. Colbert-Threats commented that the system would be of use to primary physicians. He said he sees about 3,000 patients a year and actually fills out the forms himself, not the orthopedic doctor or the rheumatologist. The current forms used to rate disability are three pages long, he added, and do not address function.
Mr. McLaughlin noted that ICIDH-2 is etiologically neutral, a matter of primary importance to APA. He testified that APA is very supportive of ICIDH-2 implementation. One of the largest organized participants in the beta-2 field trials, APA has over 50 sites in the U.S. and Canada with multiple providers participating in various field trial protocols.
Mr. McLaughlin stated APA believes that ICIDH-2 would be an appropriate way to capture function status information on health care claims and that this can be done in a relatively simple, methodologically sound manner.
He explained that APA has developed a simple system, expandable over time, that could begin collecting a significant amount of previously unavailable data on functional status. APA chose the activities dimension as the place to start collecting information for use on claim forms for clinical interventions. The majority of health care and rehabilitation services aimed for alleviating functional impairment in these areas. A relatively simple way of capturing activities data, Mr. McLaughlin added, could add a tremendous amount to our understanding of the functional aspects of health conditions, particularly as they are encountered and treated in the health care system.
As clinicians gain greater understanding of other ICIDH-2 dimensions, and as payers begin to understand the importance of reimbursement for interventions to alleviate the context of impairment, data collected on the activities measures will be an important step in starting to focus the U.S. health system on function improvement, and supporting accountability in these terms.
In each category, a gatekeeping health care professional could enter two of the ICIDH-2 qualifiers: severity of the limitation and the use of assistance. This high level coding would begin the process of collecting functional status data, and would be used to direct the patient to a specialized health professional that would provide a more finely grained classification of the limitations.
Logistical and feasibility barriers to implementation vary, depending on ICIDH-2’s proposed use. The barrier to the high-level coding scheme is educational and could be alleviated by selective review and study of the ICIDH-2 manual. This system consists of clearly valid, dimension level criteria, and issues related to reliability and standardization would be alleviated through the use of a simple rating of severity, that first qualifier ranking.
APA approached WHO with a proposal to develop a standardized assessment manual to provide all health professionals with the necessary tools to accomplish the goal of reasonably reliable and valid classification. A standard approach to the procedure of classifying with ICIDH-2 will be specified and standard interpretations for the terms and concepts provided. Wherever possible, these will be defined operationally in terms of observational events or independently verifiable information. APA intends to develop this assessment manual through an interdisciplinary, collaborative process, and to involve health care decision-makers and policy experts in the development.
Mr. McLaughlin stated that APA does not find major conceptual barriers to using ICIDH-2 with infants and children. Their expectation is that limitations identified in beta-2 field trials will be addressed in the final revision. A special version of ICIDH-2 might be developed for children, but APA contends that the current version offers a framework that can be used across the life span.
Mr. McLaughlin summarized how a variety of functional sequelae may result from any physical disorder and often result in functional limitations. If behaviors cluster around recognized signs and symptoms, the individual may be diagnosed with a disorder, receive appropriate treatment, and these services appropriately reimbursed. If the sequelae fall beyond these recognized patterns, appropriate treatment may not be delivered or health care professionals reimbursed for the care necessary to improve functional status. ICIDH-2 identifies the functional effects of health conditions and will allow health professionals to develop treatment plans that focus on a patient's actual functioning, not simply on diagnosis. Use of ICIDH-2 would also assist with treatment documentation and evaluating outcomes of treatment.
He remarked that any collection of information about the functional status of an individual is subject to privacy and confidentiality requirements. The electronic collection of health data poses a number of challenges, but AOA believes that ICIDH-2 poses no special concerns.
One example of current use of ICIDH-2 by psychologists is an intake system under development by the Division of Rehabilitation Psychology in the Department of Physical Medicine and Rehabilitation at the Ohio State University School of Medicine. The DRP practice plan is developing a system to codify patient limitations present at intake.
Mr. McLaughlin conveyed APA’s recommendation that ICIDH-2 activities chapter codes, or a subset of chapter codes, begin to be collected on administrative health care claims forms. These data could potentially be reduced to approximately ten number fields, depending on the number of categories considered.
Dr. Threats discussed the benefits of using ICIDH-2 as a statistical, research and clinical tool. He reported how the University of Chicago Hospital at Schwab Rehabilitation Center has adopted ICIDH-2 as a model in rehabilitation. He noted that they have used the classifications as a structure; they have not implemented the actual codes themselves, though he said that is what they are working towards.
OT, PT, and speech therapy developed a single evaluation form, focusing on activities and participation,. One form with ICIDH-2 terminology and classifications serves for evaluation, patient history, and functional status summary. Rehabilitation potential, treatment planning and goals are also included. All therapies gear their individual treatment toward reaching common goals and sign the bottom of the same form.
The number of forms was reduced from 19 to 6; the number of pages of reports went from 50 to 18. The staff reported the documentation and approach substantially increased communication between the therapies, provided meaningful information to all team members, and better consistency in clinical practice across all levels of care, more patient ownership and patient-centered teams and goals.
Dr. Threats described how ICIDH was being used in speech pathology at the activity and participation levels.
He stated that ASHA was impressed with the changes in beta-2 concerning communication and swallowing. ASHA’s input had resulted in substantial changes and they fully support ICIDH-2’s philosophy and goals.
OT already uses the ICIDH model, Dr. Stark reported. In AOTA’s practice guide for OTs, ICIDH is a major component of understanding the relationships between person, environment and outcome factors. OT education requires an understanding of this interaction between person and environment and the resulting occupational performance. All emerging scientific models of OT recognize this interaction and the outcome of performance or social participation. This interface is addressed in OT’s uniform terminology. Dr. Stark said AOTA looks to ICIDH to work as a language neutralizer, making communication between disciplines easier and more effective.
ICIDH is emphasized in textbooks, is often cited in the literature, and is emerging as a model for new program development. The University of Kansas Medical Center will begin a doctoral program with an OT program on the ICIDH model and the concept of participation. WUSM is considering ICIDH as the model for its doctoral program in disability studies. Dr. Stark noted ICIDH turned what classically was known as the pathophysiology course for OTs from a basic diagnostic model to a model that explores the impact of impairments on activities and participation.
Dr. Stark stated that many emerging practice models in OT use this concept. OT tends to be less medically-and-hospital-based; she noted, and as OT moves into the community as a general practice, the ICIDH model is guiding the practice.
Dr. Stark discussed ICIDH’s value to OT. The classification scheme addresses the outcome measure of individual performance across disciplines. It recognizes the environment’s contribution to the performance of people with disabilities, and it has the potential to eliminate language barriers between professions.
As pressure for accountability increases and evidence of clinical effectiveness becomes required for reimbursement, Dr. Stark said ICIDH could provide a measurement of appropriate clinical outcomes. ICIDH would enable payers to recognize relevant performance gains in therapy.
Similarly, ICIDH will assist in guiding assessment. ICIDH more closely reflects the reality faced by people with disabilities across cultures and social systems, and assists professionals in describing, justifying and monitoring the treatment strategy that they build to support their client performance.
Dr. Stark noted that AOTA has participated in the beta testing and understands current limitations, which, she said, are to be expected in a developing model—“ICD is on its tenth version.” There are some problems with the categories; operational definitions within major categories need to be tightened. AOTA urges that categories be better defined and that clearer distinctions be made between activity and participation, and activity and body function. Members did not find it appropriate for children or people who rely on care givers. There is a need to remember that ICIDH is not an evaluation tool and that reliability and validity information is pending. Privacy is a major concern. Dr. Stark suggested a team approach would probably be the best way to address these issues.
Dr. Stark emphasized that the strength of ICIDH-2 is the explicit recognition of the environment’s impact on performance. AOTA believes that the use of participation in shaping meaningful individual outcome is critical. An understanding of participation environmental contributions to disability will influence how we can affect the health of people with disabilities. She identified the participation and environmental levels as the missing elements in the medical system that need to be understood.
Dr Stark described ICIDH as “a great tool to track performance consistently across the continuum of care, as we move from acute to more community-based care as our population grays, and as technology extends longevity. ICIDH-2 will capture and help us understand the things that need to be in place to help people participate.”
Dr. Stark cautioned that there is a need to recognize that people and the environment are static. Participation will change over time, as abilities change, and as environment barriers or supports get put in place. The system needs to recognize that.
Dr. Stark concluded that AOTA is prepared to include the model in practice guidelines. AOTA is working to use ICIDH to support its understanding of disability. It is in favor of working with PT and speech and other disciplines to develop the model more fully, and to support rehabilitation and the outcome measurement goals. The inherent value of the ICIDH-2 for OT’s is the explicit, operationalized relationship between a person’s functional capacity, their environmental context, and the person’s ability to participate. In order to track meaningful health outcomes, an understanding of the person’s participation (as a function of the environment as well as the person’s health status) is critical. OT recognizes that the ICIDH-2 is in development and has problems with individual items within each category, but anticipates a rigorous scientific approach will result in a well developed, valid, reliable measure.
· Andrew Guccione, P.T., Ph.D., FAPTA, American Physical Therapy Association
Dr. Guccione’s discussion concentrated on the disagreements to be found within the profession regarding ICIDH. He declared that APTA does not have, nor is it likely to have, a stand on ICIDH. They already are integrated in practice, research, education and accreditation with the NAGI model. Dr. Guccione expressed concerns about the face validity of ICIDH, particularly in the area of participation and how it addresses the environment. He contended there was a lack of specificity about the environmental impact on the activity. The concept of participation, he added, is too deep and does not adequately distinguish restrictions to participation that can be handled at the individual level. It ignores the level at which problems of participation, formerly described as disability, need to be addressed in the rehabilitation therapy groups.
All of APTA’s positions and policies are mandated to be written in NAGI/IOM language. Any alteration, he stated, would mean a huge political internal change of educational and research structures. APTA recently published a clinical research agenda that did adopt elements using the terminology derived from the framework of the NAGI model, but did not commit to the specific vocabulary. Dr. Guccione acknowledged that, at the level of vocabulary, ICIDH-2 is exciting. It is always a gain, he said, when somebody else figures out all the different ways of coding. And potentially ICIDH-2 is a good resource for cross-walking to charts and the development of computerized documentation systems.
Because of its apparent appeal to other professions, he said the second edition of AOTA’s guide to practice will contain two to three paragraphs about how to crosswalk between systems. He emphasized, though, that AOTA is deeply embedded in the realities of reimbursement and the HCFA 1500. AOTA has created a model neutral template for documentation. Dr. Guccione pointed out , however, that this may be irrelevant if ICIDH does not suddenly hook up with the insurance community and the governmental community that is developing instruments. He referred to the validation study of the MDS-PAC, which will become a widespread instrument for the documentation across the post-acute, chronic life of a patient or former patient. ICIDH is not mentioned and Dr. Guccione questioned how one could crosswalk it. Any system that does not facilitate the process will meet with widespread objections, he cautioned. While the professionals might not be able to inhibit the widespread introduction of the terminology of the ICIDH-2, the health care industry can “put to a halt” anything with which it has not been included.
Dr. Guccione remarked that one should never presume that in the interest of communication across disciplines, the disciplines will not continue to develop their own specific languages. A PT could not think like an OT, because the PT doesn't provide the interventions that an OT provides. The real barrier to getting the ICIDH grammar -- not its vocabulary, but its syntax and its thought processes -- into the minds of rehabilitation therapists will be whether or not it improves the classification abilities of rehabilitation therapists to do the job their hired to do. Physical therapists may use the words, but whether they ever will gravitate towards ICIDH-2 as a way of making themselves more self-reflective practitioners remains to be seen. MDS mandates that, unless you fill out the minutes properly, you don't get paid. Accuracy determines whether and how much one gets paid. And one doesn't get to provide services that they don't get paid for.
· Discussion
Mr. McLaughlin clarified that APA does have international members, but, while there are psychological associations in other countries, there is no international association of psychologists. He noted that developing an assessment manual would be an iterative process, an effort APA is discussing with WHO and weighing among themselves. Initially, it was conceived for the North American market. If it is produced for an international market, APA will include international providers. There will be only one manual, useful for all professionals. Other disciplines will be involved in the development.
He conveyed APA’s confidence that ICIDH can be simplified for use on an administrative claim form. Distilling the system to its most clinically relevant areas could serve as a first step in integrating ICIDH-2 into the health care system. The assessment manual will be required for finer grained use of the system Validity and reliability issues need to be addressed. The set of definitions needs to be more specific.
Dr. Stark commented that OTs work and are reimbursed in the area of activity. They are concerned that structures dovetail and that they are not overwhelmed with paperwork. She asked for clarification: (1) How can we get reimbursed for environmental modification; and would this structure allow payment systems to support people getting in and out of their homes? (2) What steps will one take to write goals and have treatment activities that support participation?
Dr. Threats commented that providers do not want to see a dollar amount attached to a code.
Mr. McLaughlin stated ICIDH’s etiological neutrality can be useful in reimbursement. Psychologists find themselves providing services in clinical settings to raise functional status, but these services do not necessarily congregate around an identifiable diagnosis. Finding a way to classify functional status and encourage reimbursement for services based on that classification is an issue and ICIDH may be the answer.
He expressed concern that the health care payer community is not connected to ICIDH. He noted that the assessment manual would be a major investment on the part of APA. They are considering developing stakeholder meetings to determine if insurance companies, HCFA, and other providers are interested in developing ICIDH. APA believes that, in the long run, reimbursement based on functional status may be more cost effective.
Dr. Guccione stated that he would not be enthusiastic about going forward with the definition of participation as it currently is defined and identified. While appreciating the occupational therapy concern that, finally, contextual factors and environmental modifications might be recognized, he is concerned that the participation definitions will not mesh with insurance perspectives.
Mr. McLaughlin stated that APA also is concerned. He added that focusing on activities as the closest clinically-related activities to what is currently being reimbursed is geared toward making this functional.
Dr. Ruggieri’s field of interest is medical concept representation, particularly the computerized medical record. He is involved in the development and evaluation of standardized, controlled medical terminologies, classifications, and nomenclatures, and the provision of terminology services to support medical concept representation in routine clinical practice. He focuses on the modeling and representation of functional status.
Dr. Ruggieri stated that understanding the requirements of the use cases, the scenarios, processes, and decision activities this data field would support is fundamental to addressing ICIDH issues. Considerable health care data exists, but much is not realistically accessible; often, there is a need to rely on health care claims data and other sources more practically available. But the most convenient cache is not necessarily the most appropriate vehicle for data. Key questions include: (1) Are there administrative activities or use cases utilizing this data field? (2) If so, what are their information requirements? (3) Does the administrative health care meta data registry serve as a convenient vehicle for the data? (4) Will the burden of creating a new data field be worth it, at least for known use cases?
The emergence of ICIDH, Dr. Ruggieri noted, offers an opportunity for achieving conceptual clarity within the functional status domain, a landscape that still remains unclear. ICIDH's most powerful feature is its embodiment of a "tacit" yet convergent conceptual model of human function developed through consensus among broad based domain expertise. He called it a significant landmark in an effort to conceptually represent knowledge and concepts of functioning.
ICIDH describes itself as: (1) a multi-purpose classification, (2) a common language for describing functional states, (3) a description of situations with regard to human functioning and disability, (4) a unified, standard language and framework for describing human functioning and disability. Dr. Ruggieri considered this an important clarification. A classification describes things or states around common features or attributes; as a result, it can only represent members at the level of those aggregating features. Conversely, a language serves to represent in fine detail all concepts within a domain. It is difficult for any classification of functioning and disability that partitions and separates conceptual entities along aggregations, rules and common attributes to be both.
ICIDH-2 documentation states that a classification should be clear about what it classifies, its universe, its scope, its unit of classification, its organization, and how these elements are structured in terms of each other. ICIDH should be held to its own bar. Dr. Ruggieri depicts ICIDH-2 as a classification that seeks in some way and level of granularity to provide representation and describe and communicate information about functioning in the context of health-related conditions, but only at its predefined level.
Dr. Ruggieri identified several representational issues of concern that could preclude its blanket acceptance as the representational scheme of choice for functional status data in an administrative health care form: (1) ICIDH-2 has yet to express in a formal, explicit manner the conceptual model of functional status on which it is based. (2) This tacit model has not been subjected to the rigor of a formal modeling effort, using an explicit and exact modeling notion. (3) Many ambiguities seem to exist among ICIDH-2’s classes and relationships. A nurse, health services research scientist, computer programmer data modeler, and physician reviewed ICIDH-2 and its documentation and could not agree on its conceptual intent.
Ambiguities identified include: (1) potential ambiguities and inconsistencies in conceptual definitions that a formal, explicit data model could resolve, (2) difficulty consistently matching varying levels of granularity clinical uses can require, (3) ICIDH does not provide a hierarchy of global functional status, nor does it address composition of one from the functional status dimensions, (4) ICIDH-2 cannot represent an activity in the context of a participation; the coding structure cannot permit a promotion of an activity into participation--How would one decide on a domain within a dimension, and at what sublevels? (5) ICIDH-2's uniform qualifier might be too coarse and arbitrary.
Dr. Ruggieri emphasized that creation of a model should precede formal adoption of ICIDH-2. Gains from such a modeling effort include the elimination of hidden concept ambiguities, inconsistencies, promotion of widespread understanding and acceptance, and providing the opportunity to build interfaces and mappings to existing concepts within functional status information structures and data, as well as other models that exist about functional status.
Criterion that should be met prior to adoption of ICIDH-2 to represent a functional status data field include: (1) Insurance of the stability and permanence of the classification over time. How are the developers committed to proper maintenance and versioning of the classification effort? What guarantees are there that there will not be deletions, reassignment, or modification of leading codes over time, as occurred with ICD-9? (2) A standard protocol should guarantee concept permanence by means of formal retirement and remapping of codes. ICIDH-2 should have mechanisms in place for the expeditious incorporation of new functional status concepts. The code hierarchy currently limits expansion in certain sublevels to only 10 concept classes. WHO has carried on the ICD tradition of including the unspecified concept classes, which can foster ambiguity and confusion.
Dr. Ruggieri also cautioned that: (1) ICIDH-2 defines it scope as human functioning in the context of health conditions. He suggests its attempt to classify environment factors could be regarded beyond its stated scope, and questions what the individual health-related uses of such a classification would be. (2) The ICIDH-2 environmental axis classification invites etiological conclusions about environmental entities and their impact on individual function that might be viewed as controversial. This could lead to wholesale rejection, he suggests, and proposes that only selective parts of ICIDH-2 be considered for representation of a functional status data field.
Dr. Ruggieri recommended that concepts, class definitions, and their relationships intended by ICIDH-2 should be formally and explicitly expressed in the Unified Modeling Language notion, the modeling language of choice for Health Level-7, the health information standard setting body. Such an explicit and rule-based model would allow broad agreement and understanding of classification across disciplines and uses. A model would serve as a blueprint, which can enable ICIDH to relate to other representations of functional status present in the health care record. These would include the SF-36, the HAC, and other validated and tested functional status information gathering instruments.
He suggested that information use case requirements to be supported by ICIDH-2 should be elaborated for various entities with interests in the functional status domain, with particular attention to granularity needs. He also stated that acceptability of ICIDH-2 should be based on how well it enables the roles within the identified use cases. He reiterated that scientific evaluation and testing should be performed and reviewed to determine how well ICIDH-2 provides content coverage across functional status related domains before it is adopted to represent a broad base health care claims data field. Study and comments by medical and social science domains with interest in functional status should be sought.
Dr. Ruggieri concluded that he would not recommend incorporation of ICIDH-2 into a functional status data field on health care claims forms, adding that the classification might have valuable potential applications elsewhere. He emphasized that ICIDH-2 holds a promising conceptual core around which standardized representation of the functional status information domain can crystallize and evolve. However, ICIDH-2's suitability for representation of functional status depends on designated uses and hinges on granularity issues. He urged that every effort be made to elucidate those uses and their data needs and called for studies to evaluate how well ICIDH-2 serves informational needs in various clinical settings-- especially domains holding particular interest in functional status.
He encouraged U.S. collaborators involved in ICIDH-2 development to focus efforts on needed areas for iterative improvement of ICIDH including: formal model elaboration, content coverage evaluation in various health-related settings, and convergence with other information standard development efforts. He added that ICIDH-2 should be canvassed through the appropriate health information standard setting bodies: HL-7; International Standards Organization, Technical Committee 215, and American National Standards Institute, the Health Information Standards Board. Finally, he stated, if the classification is adopted, appropriate infrastructure needs to be in place for its proper maintenance.
In conclusion, Dr. Ruggieri said that all of his recommendations are congruent with the guiding principles for promoting patient medical information standards that were communicated through Dr. Lumpkin to Secretary Shalala on behalf of NCVHS: meet the data needs of the health community; be supported by some sort of accreditation body; have timely developmental testing, implementation, and updating; be precise and unambiguous; and incorporate flexibility to more easily adapt to changes.
Dr. Andresen discussed comparative norms and standard values. She pointed out that whatever is selected to go into the administrative record must also be able to compare different groups and the general population. Also, if it does not utilize the same measurement tool (if it is not drawn from, for example, the Behavior Risk Factor Surveillance System, the National Health Interview Survey, or some other nationally normed data) there will be a need to crosswalk between the administrative record and other systems.
Dr. Andresen noted that it takes a long time to establish normative data. Changing to a system for which there is no national level normative data will involve a time lag. Data elements that already have a history and normative data behind them eliminate this necessity.
Granularity, Dr. Andresen stated, was one of the aspects of having the right measurement models. She observed that any tool that measures some level of impairment will probably leave out a lot of people.
Dr. Andresen noted the best sources about functional ability were, first, the individuals themselves, and then nurses, nurse practitioners and clerical personnel on the unit. She stated it was extremely difficult to get people to collect this kind of information on a regular basis and emphasized the need for training on an ongoing basis.
She also stressed the importance of ongoing quality assurance efforts to make sure that data is not missing and things are in fact universal. Responsiveness, reliability and validity are qualities to be built in and sustained over time.
The panelists deliberated over whether ICIDH was an assessment tool or a classification. While many saw it as a classification system, others referred to the assessment tools already available for ICIDH-2 beta-2. Dr. Iezzoni acknowledged that tools can be developed from it: MDS and OASIS could possibly be cross walked with it. But she emphasized that what WHO has promulgated and what will be voted on in May 2001 is a classification system that can be used internationally.
Dr. Kramer conceded that he was having difficulty with this whole issue of what ICIDH actually is, because the way people talk about it connotes a whole structure of care, along the lines intended for MDS. It is treated quite differently than an ICD-9 code that, on some level, says, “Here's a diagnosis.”
Dr. Cille Kennedy, chair of the International Mental Health Task Force that has worked on ICIDH since its inception, reminded everyone of the checklist Dr. Ustun showed them. She explained it is a very brief way of documenting--not assessing--disabilities, and it has ICIDH codes in it. One of the things done in the field trial, Ms. Kennedy explained, was to use the ICIDH-2 checklist when interviewing cases live or summarizing out of medical records. She described it as a quick, concise way of documenting disabilities before putting them on another form.
Dr. Iezzoni stated that ICIDH is being treated the way ICD-9-CM functions. “You write down a code that classifies what you, as a clinician, in your own implicit judgment have decided ought to be represented there in terms of the patient's functional status.” Ms. Lux observed that the point had been made that the assessment is ongoing in all the disciplines. Everyone contributes to evaluating the language function and the “whole nine yards.” The rest is simply a structure that contains those assessment results and helps form a more comprehensive picture of what's going on with the client situation. The code to classify, Dr. Iezzoni interpreted–across disciplines is, based on your own disciplinary evaluation, and/or the patient self-report, Ms. Lux added.
Dr. Iezzoni considered that, as a committee, they were going to have to really struggle to clarify their understanding. She noted that the panelists had parsed their words quite carefully, from their own disciplinary perspectives, and encouraged everyone to review the complete transcripts.
Dr. Ruggieri agreed that ICD-9 was not a model, but a way of categorizing causes of death, procedures or disabilities. On the other hand ICIDH, based on the documentation, is a model containing concept functioning and a declaration that functioning is comprised of dimensions. Describing ICIDH as a very elegant model, Dr. Ruggieri added “what it needs is formal, rigorous expression in a syntactically rigorous modeling language, which will ferret out ambiguities and inconsistencies that can lead to bias.”
Dr. Iezzoni asked if Dr. Ruggieri thought ICIDH could be put through this “egg beater type of process” that he described and come out the other end recognizable, to which he responded, yes, but in order for ICIDH to be incorporated into the ultimate computerized medical record, there has to be exact definitions.
Dr. Ruggieri mentioned that Medical Information Resources at Mayo was working on a UML model and a functional status informational model for ICIDH. Dr. Ruggieri responded to a query about what alternatives Mayo had for classifying functional status—Do you have another solution? Mayo's goal, Dr. Ruggieri said, is to represent, in a computerized format, the expression in terms meaningful to the provider. And if ICIDH serves some uses in the clinical arena, then we want to provide that classification in that scheme, available in an automated form. We of course record functional status. But we have no formal classification system. We provide ICIDH to our users. Dr. Iezzoni stated she knew there were people who desired this. OTs. PTs perhaps. She asked who else was interested? Dr. Ruggieri replied he did not know yet about the institution-wide awareness. Dr. Iezzoni reflected that that was a problem system wide.
Dr. Iezzoni thanked everyone for their insights on paradigms and language, and the hearings were adjourned at 1:00 p.m.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/Lisa I. Iezzoni, M.D., M.S. November 1, 2000
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Chair Date