94 PERCENT AWARENESS
AND STILL NOT ENOUGH DONORS

CAN PUBLIC EDUCATION INCREASE
    ORGAN DONATION?

John Davis, National Kidney Foundation, Inc.

Introduction

Every public opinion survey regarding organ donation and transplantation shows
one undisputed fact: the American people are very aware of organ donation. They
always respond at rates over 90 percent to questions about awareness. Yet, the
donor shortage goes on. Something must still be needed that will translate
awareness into a larger supply of organs.

This paper explores the-role of public education in that relationship. It looks at
what we in the transplant community have done to educate the public and what
we.would like to do. It also examines some of our basic assumptions and some of
the conventional wisdom which has guided our planning. It isn't possible to
calculate the amount of money, time, and energy we have devoted to public
education. It has been considerable. We have achieved an awareness of 94
percent (1). That is a major accomplishment. Still, we don't have enough organs.

Can public education increase organ donation? The answer is no, not by itself. It
is unrealistic to think that if we could just educate the public more, or better, the
shortage would disappear. Public education is important, but it alone cannot
increase the supply of organs, Its role is a supportive one, not a primary one.
That concept challenges our basic assumptions about what public education can
and should do and how we should conduct it.

Why is organ donation so different?

0    It is not something you can do yourself.
  0    It is not something that benefits you at all.
  0    You cannot cause it to happen.
  0    It depends absolutely on someone else doing something.
  0    It is extremely unlikely.
  0    It occurs only after you're dead.

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Traditional health education planning models have to be reconsidered when we
apply them to these circumstances.

We usually think of public education in mass terms. But, the really important
people are the 12,000 or so families who will be in a position to agree to organ
donation next year (2). Campaigning to reach all 250 million Americans is not cost
effective when we understand that currently half the families who actually could
donate aren't even asked (3).

Public education has to fit within a total effort to raise the supply of organs. That
means a concentration on the supportive and maintenance role of public education
in allocating a community's scarce resources. A 94 percent awareness'rate means
the job is maintenance. Education should support the real circumstance of .organ
donation. That occurs in a hospital waiting room when one family hears one
question. That's when we can tell if our education is working. If they've heard of
organ donation, talked about it, and know it's what their loved one would have
wanted, we've been successful.

The goal of public education is "To maintain a level of public awareness of organ
and tissue donation which will favorably dispose families toward donation if they
are ever asked to grant permission." Many things have to fall into place in order
for organs to be donated. Public education can help the process be successful, but
it can't go beyond that. We can't expect families, at that particular time in their
lives, to seek the donation opportunity. That's why public education can't increase
organ donation; it can only help the process be successful once the process has
begun. Until that process begins a-lot more frequently, public education will
remain a secondary challenge. This does not mean that public education is
unimportant. It is, and we're still going to do it. We need to maintain the
excellent level of awareness that we've reached.

The time of organ donation opportunity is an emotion-laden, stressful, personal and
private part of a family's life. We want our education to have predisposed the
family toward agreement. We don't need to give them all the facts or details. We
just need to have created the right atmosphere in their minds so that it seems more
natural to say yes. To do that we hope they have a sense that:

o    Transplantation is "good".
o    Organ donation is the "right" thing to do.
0   When a person dies "senselessly," the only "good" possible is organ
    donation.

o   The person who died, a "good" person, would have wanted his or her
   family to do the "right" thing.

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If those ideas are the sense of the situation in.the family's mind, the process will
be successful. Our planning should concentrate on what creates that sense, what
reinforces it, and what would work against it. Those questions are the foundation
of a new approach to public education.

Cur educational framework should be built on a few basic, easily assimilated,
simple themes, frequently repeated. We should skip the details; they are too
negative, too easily misunderstood-and too. complicated. We want people to feel
that organ donation is good, the "moral" thing to do.

Dur mission is not to raise the educational level of the American people. Our
mission is to increase the number of organs donated in this country so there can be
more transplants. Public education is an important part of that. This Surgeon
General's workshop gives us an opportunity to reflect on our successes and our
challenges. It should be a catalyst for us to re-examine our thinking, evaluate our
assumptions, clarify our intentions and renew our commitment to support our
mission with effective public education programs,

Current State of the Art

A 1987 Gallup Poll conducted for the Dow Chemical Company, reported that 94
percent of all Americans were aware of transplantation and organ donation (4). In
general, the series of public opinion surveys conducted during the 1980s have
consistently reported very high awareness (5). The latest poll, taken in 1991 for
the Partnership for Organ Donation, reported that 84 percent of Americans actually
support the donation of organs for transplantation (6).

In spite of that high degree of public awareness, the transplant community
continues to face a severe shortage in donated organs. In April 1991, the Institute
of Medicine released a study of the End Stage Renal Disease Program called for by
Congress. In that study, the IOM reports, "Kidney transplantation...is the preferred
treatment for a majority of ESRD patients...The major factor limiting access to
transplantation is the shortage of available kidneys" (7).

Information revealed in the various polls illustrates the continuing problem:

0  "The population is aware of transplantation . . .People remain supportive of
transplantation, yet ambivalent about organ donation" (Battelle, 1987)(8)

0 "84% of those aware of organ transplants have heard about organ donor
cards" (Gallup, 1986)(g); "20% of those aware have completed an organ
donor card" (Gallup, 1987)( `I 0)

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"92% of those aware of organ transplants say they heard about them on
TV" (Gallup, 1985)( 11)

"Surveys indicate that the public's awareness of transplantation is high, but
its enthusiasm for donation is lower...". (IOM,, 1991 )(12)

"67% of those aware of organ transplants see an organ donor as loving,
generous person who cares about others. Even among respondents not
likely to donate their own organs over half (53%) picture this type of
person" (Gallup, 1985)(13)

"If the family knew of their loved one's wishes, 94% said they would honor
the request; if the family members did not- know, only 54% wquld donate
the relative's organs" (Gallup, 199 1 )( 14)

"73% said they would likely want their organs donated upon death. 76% of
whites and 45% of blacks" (Gallup, 1991)(15)

These polls describe the public's perception of the relationship it has with the
transplant community. We have done a good job of creating and sustaining
awareness. However, that awareness hasn't translated into more donation. The
IOM'points out the inconsistency between polls showing that the public is aware
and the worsening shortage, I'.., the number of all kidney transplants grew an
average of 5.5% per year from 1974 through 1978, then at more than 10%
annually from 1978 to 1986. Since 1986, however, no growth has occurred, and
the numbers have actually decreased slightly" (16).

It is interesting that the trend stopped in 1990. The United Network for Organ
Sharing's data reports that the number of transplants actually increased in 1990
over 1989 by 15 percent. That rate was made possible by an increase in cadaver
donors of 11 percent. There were 4,`357 cadaver donors in 1990; that's up from
3,923 in 1989 (17). It's too soon to tell whether that indicates an upward trend in
dealing with the shortage or a one-time uptick.

What is clear is that the number of organs donated does not begin to meet the
need for transplants. Those waiting for a transplant has grown to over 23,000
(18). It is also clear that the number of cadaver donors is not anywhere near the
number of medically suitable potential donors. The IOM reports, "Actual acquisition
may be one-third to one-half the potential pool" (I 9).

Howard Nathan and associates conducted a study of the donor pool in
Pennsylvania and surmised that half of the potential donors were never considered

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for donation. He places the size of the potential donor pool at between 38.3 and
55.2 donors per million population per year. If.those donations were realized, there
could be twice as many donors and more than twice as many transplants (20).

Public education programs exist throughout the United States sponsored by
national, regional, and local organizations. Every conceivable tactic is being tried
by some organization somewhere. The sponsors of the messages may be totally
committed to organ donor education or only marginally interested. The scope of
the programs may be national or local, and. their content may be coordinated within
an area or not. It isn't possible to calculate the,dollars being spent or the time
being invested in these programs.

Edith Oberley and associates undertook a study of the educational programs
underway in 1991 and reported; "Programs continue to be local and uncoordinated
. . ..TV is underused and often badly targeted....few programs are minority
targeted.. . . no easily identified message.. ..lack of consistency.. . .language levels too
high." She describes one unfortunate common denominator of many of the
programs: "... public education has often been an ,afterthought as transplant related
organizations have focused on professional education and administrative concerns"
(21).

The. major national organizations all appear to be planning an increase in their
public education programming. UNOS is working with the J. Walter Thompson
advertising firm. The Association of Organ Procurement Organizations is working
with a design firm on graphic representations of the need for organ donation.
Many other programs, such as the Dow'/NAACP and the National Kidney
Foundation's New Year's Resolution Campaign, are ongoing. Most other national
members of the transplant community are committed to public education as well.

Public education requires a large investment of scarce resources. Organizations
can benefit from exchanging ideas before developing expensive programs.
Programs are more effective when they are planned and developed in a coordinated
fashion and supported by the shared experience and knowledge of all those
interested. Sharing would also facilitate clarity and consistency in messages which
are currently diverse.

The UNOS Board of Directors approved a resolution that UNOS "participate in the
formation of a multi-member coalition to coordinate national efforts in order to
improve organ donation throughout the United States" (22). UNOS bases its
concept on its current clearinghouse which compiles information on past and
present educational efforts. This expansion would not replace the current planning
processes and needs of the large and diverse group of member organizations. To

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be successful, the consortium would not compete with its members for funds or
public recognition, nor would it seek funding or conduct its own programs. It
would serve as a clearinghouse for future programs in public education.

Historical Analysis and Evaluation of Organ Donation
        Education Programs

Transplantation began to make headlines in 1954 with the exciting news that a
kidney had been successfully transplanted between two individuals (23). The
identical twin transplants were one of the scientific breakthroughs of the 50s. The
Reader's Guide to Periodical Literature reports that 19 articles on the subject of
transplantation appeared in 1954 alone (24). Twenty-five more articles appeared
in the next 2 years (25). Typical was an article in -9
                         entitled
"Spare Parts for the Human Body" (26). Identical twin transplants, followed by
closely related living donors, were the only procedures commonly done before
1964.

Interest in transplantation grew as the operations became more common,
especially when they began to involve non-living donors. The Reader's Guide
shows the average number of articles per year increased from 13 during the late
50s to 34 in the 60s (27). This coincided with the launch of a campaign to pass
the Uniform Anatomical Gift Act (UAGA) in the late 60s. Medical and lay
organizations enlisted public support in getting the measure adopted by all 50
States. That was accomplished by 1969 following an all-time high in magazine,
articles of 85 in 1968 (28).       :

One of the most publicized events in the history of transplantation was the first
heart transplant in 1967 (29). Extensive media coverage from Capetown, South
Africa was a major landmark in making the public aware of organ donation and
transplantation as a clinical therapy. This boosted the early efforts to gain public
support through donor cards which were made possible by the UAGA.

The National Kidney Foundation, the American Medical Association and other
groups began a major effort to distribute donor cards in the early 1970s. Signing a
donor card became a theme of most efforts to reach the public about organ
donation. Thousands of cards were distributed at health fairs, in grocery bags, in
direct mail pieces and as part of fund raising campaigns. They became the focus
of television public service announcements, posters, billboards and even stickers
saying "I Love You... With All My Kidney."

Another landmark was the inclusion of transplantation and dialysis in the Medicare
program in 1972. This coverage stimulated a .phenomenal growth in the number of
people waiting for a transplant, When the program began in 1973, 15,000

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Americans were on dialysis. Today that number exceeds 115,000. The demand
for transplantation and the mechanism for paying much of its costs grew out of
the one sentence addition to PL 92-603 (30).

Another catalyst for public awareness of transplantation was television star Gary
Coleman. For several seasons one of NBC's most popular shows was Diff'rent
Strokes, starring the 4' 9" Coleman.  Much media attention was focused on the
fact that Coleman had received two kidney transplants by the time his show
entered syndication (31). Coleman discussed his transplants and the need for
organ donation on talk shows and in interviews.. He became the spokesman for
The National Kidney Foundation and appeared in TV and print ads for several
years.

The pace of transplantation and organ donation education picked up in the 1980s.
More organs were being transplanted and the need for donation was highlighted
throughout the decade by on-going media events and news coverage. President
Reagan appealed on television for donors for children awaiting liver transplants
(32). Organ donation was in the news, and messages about it were disseminated
by many groups. The National Newspaper Index shows a steady increase in the
annual number of articles in major papers from two in 1981 to 37 in 1990 (33).

The Federal Task Force on Organ Transplantation, created by the Transplant Act of
1984, specifically reviewed public education initiatives, concluding: "Programs
were local, uncoordinated, inconsistent and redundant. Programs lacked specific
goals and were not evaluated...Not targeted to minorities...if effective, the ethnic
donor profile would more closely resemble the pool of recipients...TV use was
uncoordinated and uneven in quality" (34).

Between 1987 and 1989, the American Council on Transplantation analyzed
current public education programs under a contract with the Division of Organ
Transplantation. Some of its analyses were: "Fears about donating are not
adequately addressed.. . Programs do not convey the message that transplants
work. . . Almost 50 percent of programs do not have an evaluation component. . .
Programs do not meet the specific needs of defined audiences... Programs are
generally targeted to the `general public!... Programs use the same message for
several different audiences" (35).

The IOM Study reflects on public attention in the 80s with these conclusions:
"The public's willingness to donate organs may be influenced by the newspaper
and television publicity that transplantation receives. There may be negative effect
of adverse publicity, such as that about anencephalic donation or cross-species
transplants. The news value of organ transplantation may also be of limited or
declining interest to newspapers and television. These dramatic procedures
received substantial television coverage from 1983 through 1986, as public

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attention focused on the plight of a small number of individuals, often children...
Data developed `by the IOM staff suggest that the novelty of organ transplantation
may have worn off and that the story may be less newsworthy" (36).

Those three authoritative studies present a discouraging picture of the efficacy of
public education in the 80s. This is especially true since spending on. public
campaigns increased during the same period.

During the 1980s and early 9Os, there were many events and projects designed to
reach the public with a message about organ donation. They illustrate the best of
intentions and uneven results. The plans were mostly made in isolation and carried
out with insufficient resources. Groups did all they could, but success was not
reflected in the rate of donation. It might be useful to review public education at a
time when the field was rapidly changing. These are not an all inclusive history of
the decade, but a glimpse of how we tried to reach people because we thought
they should support our cause.

One of the first events of the decade was the birth of National Organ and Tissue
Donation Awareness Week (37). It began as a single day in 1983 when The
National Kidney Foundation brought its Honorary Spokesman, comedian Pat
Paulsen, to Washington, D.C. to roam the halls of Congress in search of dignitaries
to sign donor cards. Paulsen, known as a perennial Presidential candidate, secured
the signatures of several Congressmen and Senators. Modest press coverage
resulted, and support was received by the United Steelworkers of America and
other groups.

The project was repeated the next year with similar results. Press coverage
increased when photos were sent to the Congressmen's home town papers. The
following year's ceremony was organized through the American Council on
Transplantation and supported by the Dow Chemical Company and their public
relations firm (38). Its highlight was'the signing of a donor card by Vice President
George Bush. The Vice President's participation caused a noticeable increase in
publicity as did the services of a professional public relations firm.

The day was expanded into a week and coordinated by ACT for the next several
years. Events were sponsored in Washington and included receptions on Capitol
Hill and ceremonies featuring recipients and representatives of organizations
involved in transplantation. ACT prepared kits with ideas for local activities, which
were sold to groups around the country. Many local activities were conducted by
ACT member organizations and others. The National Week has decreased in
emphasis over the past few years. However, many community projects are still
carried out by OPOs and other local groups.

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The formation of the ACT was a significant development. ACT grew out of
meetings called by Surgeon Genera! C. Everett Koop to determine better means of
coordinating activities within the transplant community (39). It was given a
substantial boost with seed money from the .Dow Chemical Company that
facilitated its organization and initial programs (40'). ACT described its mission as
follows:

0   To `motivate the public to donate organs and tissues for
   transplantation;
0   To improve donor identification and referral to organ/tissue recovery
    programs;
0   To promote recovery and use of multiple organs and tissues from
    available donors: and
a   To promote equitable distribution of organs and tissues.

"To these ends, the Council provides the ONLY national public policy forum to
address and seek consensus on social, psychological, ethical and economic issues
involved in organ/tissue recovery and transplantation. This national forum provides
the opportunity for all individuals and organizations concerned with organ and
tissue transplantation to have an active voice in the discussion and formulation of
public policy regarding transplantation" (41).

ACT's early funding and the support of influential members of the transplant
community gave it many opportunities to become a focal point in the education
effort. It held workshops, produced materials, and facilitated exchange of
information at its meetings. It received a government grant to research and
compile information on educational programming. The result was publication of
the Source Book, a reference guide to educational efforts around the country (42).
ACT remained in operation throughout the decade, although it was hampered in
later years by inadequate financing. It closed its doors early in 1990.

One personal event made national news when in 1986, United States Senator Jake
Garn of Utah donated one of his kidneys to his daughter Susan (43). Senator Garn,
the only member of Congress to ride in the space shuttle, was widely recognized
for his donation and has served in a number of honorary capacities since the
transplant.

A landmark in the public policy history of transplantation was the passage of The
Transplant Act of 1984 (44), sponsored by Congressman (now Senator) Al Gore of
Tennessee. One stimulus for the law was publicity generated by a physician's plan
to set up a kidney brokerage business which would have arranged the buying and
selling of kidneys from willing live donors. This received considerable, and usually
negative, national press attention, and focused attention on the provision of the
Act that would outlaw sale of organs. The Transplant Act also called for the

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establishment of a national organ procurement and transplant network (OPTN) to
ensure effective organ sharing and the convening of a Task Force to study
transplant issues and make recommendations (45).

The organization chosen as the OPTN was the United N.etwork for Organ Sharing
(UNOS) headquartered in Richmond, Virginia. UNOS undertook the substantial
challenge of devising national sharing policies and procedures and involved the
entire transplant community in its deliberations. UNOS hasa strong interest in
education, including public education, and serves as a major information resource
for the media, the public, and the members of the transplant community. It has
established a clearinghouse which includes information on national and local
educational programs.

UNOS joined a number of other organizations interested in organ donation and
public education. The American Association of Critical Care Nurses/NKF resource
guide published in 1990 lists 30 different national organizations with roles in
educating the public about organ and tissue donation (46).

Since the close of the 8Os, public awareness activities have continued with some
notable achievements. Among them are the award of a Nobel Prize to two
American pioneers in the field of transplantation, Dr. Joseph Murray of Boston and
Dr. E. Donna11 Thomas of Seattle (47). The U.S. Transplant Games were held in
Indianapolis in October 1990 and featured athletic competition by 400 recipients of
vital organ transplants (48). A White House reception was hosted by First Lady
Barbara Bush in April 1991 to salute the entire transplant. community and its work
(49). And this Surgeon General's Workshop brings focus to the responsibility we
have to search for new and better solutions.

Traditional Primary Sources of Public Education
      in Organ Donation

For most people, transplantation is not a part of their own personal world. It is a
rather exotic medical treatment involving other people. The media is the basic
source of experience with transplantation and organ donation for the majority of
Americans.

News coverage of transplantation has been consistently available when
developments warranted. When the, story was dramatic, like appeals for children
needing liver transplants, the coverage was extensive. The first heart transplant
(5O), the conception of a child to be a bone marrow donor (51), the donation of a
baboon heart .(52), the living donation of a part of a liver (53), the donation of a
kidney by a United States Senator all were reported (54). Also, bad publicity can
be extensive. When a physician wants to sell kidneys (55); when foreign nationals
are transplanted ahead of Americans (56); when blacks wait twice as long for a

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transplant, it's news (57). Table 1 shows that throughout the 198Os, coverage in
the country's leading newspapers was growing and fairly frequent (56).

The National Kidney Foundation's clipping service estimates that over 50
newspaper articles on organ donation appear each week in the United States (59).
Table 2 shows the number of general interest magazine.articles published annually
in recent years (60). Local events, from dedication of new hospital facilities to
mayors signing donor cards, make. the news. Individual recipients also stimulate
coverage, from Michelle Kline, a transplant recipient who was Miss Pennsylvania,
to the youngest, or smallest, or thousandth recjpient.

Television is the most frequently recommended medium for public awareness or
education messages, and was so cited by the Federal Task Force on
Transplantation, the IOM Study; the Oberley study, and the ACT Report (61). In
today's society, television is a dominant force in determining public sentiment. It
also is a highly structured business and contrary to the impression of many people,
is under no obligation to run our public service announcements or devote time to
our cause. It is required to broadcast "in the public interest" but it has a lot of
latitude in defining that term. That means, organ donation must compete with
every other good cause for media attention,

Early in 1991, several network TV series inaccurately depicted the organ donation
and'transplantation process. They addressed some of the worst fears and barriers
to donation the polls have identified (62). On L.A. Law, a person needed a kidney
transplant and the lawyers arranged to buy the organ from a woman who agreed
to claim to be a relative (63). On Knot's Landing, a main character needed a liver
transplant and a relative bribed the hospital staff to give him a donated liver rather
than to the first recipient in line, `who consequently died (64). The most outlandish
story was on a segment of Law and Order, where a surgeon was paid a lot of
money to kidnap a person and remove his kidney, leaving him to die, and then
transplanting the organ into a rich patient (65). Even the sitcom Doogie Howser,
M.D., had a segment in which the decision about donating organs was presented
in a rather coercive way (66).

More people saw these four shows than any of the television coverage of the
shortage of donors. There were many angry phone calls and letters after the
shows aired. Still, the concept of organ donation was put before millions of
Americans. Is this publicity necessarily bad? It's beyond the scope of this paper
to explore that question. However, these fictional portrayals may have started
more family discussions than all the public service announcements broadcast this
year.

Public service announcements (PSAs) are an integral part of a total media
campaign. They are used by local stations, cable systems, cable channels and the

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broadcast networks. They are the mainstay of charities and causes ana are
everyone's first thought in educating the public. Studies show they can be
effective (67).

A 1991 study, "Measuring Advertising Effectiveness", was conducted by the
Advertising Research Foundation in cooperation with the Ad Council and the
American Cancer Society (ACS) (68). The study took 2 years and cost over $1
million. It measured the public impact'of one PSA in four markets: Eau Claire,
Wisconsin; Marion, Ohio; Grand Junction, Colorado; and Pittsfield, Massachusetts.
The PSA was devoted to awareness of colon cancer, and it measured response by
assessing actions related to consulting a physician and getting tested. The study
found, Y.. the use of public service advertising alone not only increased awareness,
but also reinforced people's beliefs, fostered their intent to act and inspired
potentially life-saving action" (69).

The study used only one ACS TV spot which was repeated frequently. An
assessment was made of the number of people who took some action after seeing
it. It utilized purchased air time in which the PSAs were substituted for regular
commercials. This allowed the study to target the audience it wanted to reach.
That time used came to over $25 million. The campaign was successful in the
opinion of the study's authors. A large number of people, especially men whom
they had specifically targeted, saw their doctor and were tested.

The study proved that a public service announcement used consistently and
frequently for a long period can provoke action leading to better health. However,
the methodology was totally u.nrepresentative of a typical public service campaign.
Thus, the results are terribly misleading. In the real world, the effectiveness of this
study could never be duplicated.

The study states, "To control media placement, they relied on three national
advertisers...to donate some of their paid advertising time for running this
campaign." That simply is not going to occur for us on any meaningful scale. The
study continues ". . . a concerted effort was made to target men by placing more
PSAs than usual in sports, prime-time and early news programming" (70). Such
accessibility is not possible when PSAs compete for donated air time. Organ
donation might also reach more men if corporations such as Proctor & Gamble,
Gillette and General Motors were to purchase $25 million worth of time for it.
That is not realistic.

The study summarizes, "If the major goal of a public service advertising campaign
is to build awareness, this study showed that an average level of advertising can
accomplish this goal. It also showed that consistency and targeted media
placement are important in increasing awareness. The longer a public service

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campaign runs, the more awareness can be expected to increase. The more
targeted the media placement, the more awareness will increase among the target
audience" (71).

The main premise of the study is stated as follows,, "...consistency and targeted
media placement are critical in maximizing the effectiveness of public service
advertising." The study proves that statement. However, we cannot duplicate the
experience reported `in that study.- We have to deal with the real world of donated
TV time (72).

The effectiveness of a public service campaign can be increased by the
participation of the Ad Council (73). This coordinating group is very important in
securing donated creative services from professionals and critical in `getting
placement from the networks and, to a lesser extent, local stations. The Ad
Council operates today under new rules, adopting causes rather than specific
organizations. It helps coalitions develop funding sources and secure the best
creative talent (74). The Ad Council seal confirms that a spot has been
competently done, thoroughly researched, and deserves premium placement.

The study by the Advertising Research Council describes the typical Ad Council
Project: "In 1989, total donated media support for the more than 30 Ad Council
campaigns ranged from a low of $6 million to a high of $100 million. Fully three-
quarters of these campaigns fell within the $6 to $30 million range, which means
that the value of donated media averaged approximately $18.2 million a year for
each campaign" (75).

William Clotworthy, former Public Service Director for the NBC Television Network,
devotes 50 percent of his available time to Ad Council or Media Partnership (the
recent campaign on drug abuse), 10 percent to NBC's own public service program,
and the remaining 40 percent to all other causes (76). Harvey Dzodin, Vice
President of Commercial Clearance for the ABC Television Network, reports that
only Ad Council or Media Partnership spots go over the network in non-coverable
(local stations can't substitute local spots or commercials) time (77). These are
two of the "gatekeepers" who actually decide what television does with our
messages.

Another common practice is to use celebrities to convey messages. A large
number of celebrities have been involved in reaching the public about organ
donation, including Bill Cosby, Delta Burke, Whoopie Goldberg, Gary Coleman, Pat
Paulsen, Pernell Roberts, Bea Arthur, Carl Lewis, Sugar Ray Leonard, and others.
The National Kidney Foundation conducted a nationwide mail survey of 1100
television public service directors in April 1991 (284 responses were tallied). They
were asked to rate the importance of various factors in devoting air time to a
campaign. Only 33 percent rated the appearance of a national celebrity very

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important in their decision making;,27 percent rated it not important. In fact, local
celebrities rated higher with 41 percent saying they were very important and 18
percent saying they were not important (see figure 8) (78). Celebrities do call
attention to a cause or an issue, however they increase the cost of a campaign
and the production requirements.

Much effective communication happens.person-to-person; Such avenues are
typically part of a balanced educational campaign. By their nature, they are local
activities and are the responsibility of local transplant community members. These
tactics run the gamut from health fairs and donor signing events to a concerted
effort to speak to every service club in the area once a year. Service clubs are
frequently good prospects for co-sponsorship of a donor card campaign. The Lions
Clubs have led the way for many years with their commitment to the Eye Bank
program. National organizations frequently develop materials which can be used
by local representatives in meeting the public and disseminating information.
Religious institutions, places of worship, community organizations and schools ail
offer opportunities for contact with the public. They are places where Americans
get information upon which they build their attitudes.

Another important venue for dissemination of information is drivers' license
bureaus (79). Most states allow a notation on drivers' licenses that the holder
wishes to donate organs and tissues.  Some have an actual donor card on the
license. When people get or renew a license, there is a major opportunity for
education. Only a few States require that the question about organ donation be
asked and answered. Most leave it up to the individuals involved to notice that the
license can be a donor card. In several areas, organizations have made a major
push to educate license examination personnel and to create a display of
information in each station. In Maine a major campaign has been launched with
the Lions Clubs and the National Kidney Foundation of Maine. The District of
Columbia Organ Donation Program also had an excellent relationship with drivers'
license examiners. They have a presence in every drivers' license bureau which
gets the attention of everyone who comes in.

The opportunity is especially compelling when a young person gets their first
license. If they say yes the first time, it may become a life-long habit. it is also
significant that people under 18, as first-time drivers frequently are, need a
parent's signature on the donor card. That creates a family discussion.

An important aspect of translating opportunities for reaching people into actual
changes in attitude, is to provide a mechanism for them to get further information
or have questions answered. TV spots are frequently required to carry a phone
number for further information. Posters and other signs, direct mail pieces and

104


displays can feature a number or an opportunity for follow-up. Within a
community there are-usually several.sources of such information. Agreement
among the organizations may make.the access consistent and reliable.

Attitudes and Barriers Which Impact on
Organ Donation Public Education

The transplant community has identified attitudes the public may have which
negatively impact their support for donating organs. Typical barriers are:

0    Distrust of the medical care system

0    Discomfort with the topic of death

o    Discomfort with the topic of organ donation (80).

The community is also familiar with the characteristics of those who are likely, and
unlikely, to donate. Oberley reviews the subject: "Research has generated a very
clear and consistent demographic picture of persons most likely to express
willingness to donate their organs after death. Without exception, studies have
described the likely donor as white, younger rather than older, having more
education and enjoying a relatively greater yearly income (Battelle, 1985;
Gallup,1 987; Perryman, 1990). Conversely, the same studies have described
those least likely to express willingness to donate as being black, over 45-55 years
of age, with low income and little education" (81).

One of the comments from the Surgeon General's Advisory Workshop Committee
sums up another major barrier to successful organ donation: "A primary reason for
refusing to donate is, `we've never discussed it and we don't want to think about
it now'" (82).

Another barrier is the concept of "brain death" which the general public does not
understand. Many in the transpiant field recommend abandoning the term,
choosing to talk about death without the qualifier. It is a confusing term. A 1985
Gallup Poll showed: "Less than half (45 percent) believe correctly that a person
must only be considered clinically brain dead in order to have that person's organs
donated" (83).

Another comment from the Workshop Advisory Committee: "A major problem in
promoting organ donation is the fact that it deals with the subject of death and our
society does not discuss death" (84).

Barriers to organ donation include the disparity between blacks and whites in
awareness and willingness to donate. In 1986,. Jeff Prottas stated, "On each

105


attitude question Black Americans are less supportive and aware of organ donation
than are Whites." Prottas continues, "In our society there is a strong connection
between a person's race and the . . . . education he or she has received. For this
reason, it is possible that the strong effect of race on attitudes may be misleading;
it may be that it is really a person's educational level that determines attitudes not
his race." However, Prottas goes on to state, "...in each case the effect of the
race variable is stronger than that of the education variable...These findings imply
that if we compared a group of people with the same amount of education we
would still find significant differences'by race" (85).

The Institute of Medicine summarizes the problem:  "Black individuals account for
28 percent of the incident ESRD patient population, even though they represent
only 12 percent of the U.S. population; their incidence of renal failure is nearly four
times that of whites. Regarding kidney transplantation, black ESRD patients
represent about 30 percent of those on waiting lists but wait nearly twice as long
to obtain a kidney as do whites; they receive over 22 percent of cadaver
transplants and 12 percent of Living Related .Donor transplants. They donate
slightly over 8 percent of cadaver organs" (86).

All these barriers work against the acceptance of our educational messages. They
are attitudes we need to change and fears we need to address. It is a formidable
task to create a single educational campaign which deals successfully with all
these factors. The basic response we have supported has been the concept of
"altruism," that organ donation is "right" and that people should support organ
donation and give permission when.asked. We have concentrated on message
content, believing that the public ought to pay attention because.it is important.
However, organ donation is not very important to the public. Television public
service directors are excellent barometers of public issues in their community. In
the NKF survey, they were asked to rate the importance of organ donation relative
to the issues (figure 5). The largest response was "5". AIDS came in number one,

Organ donation also is not as visible as we think and certainly not as visible as we
hope it can become. Seventy-five percent of the public service directors rated the
visibility of organ donation in their communities a "5" or below (figure 4) on a scale
of one to 10 (87).

-The NKF conducted a more intensive telephone survey in 14 communities seeking
the opinion of the public service directors, the local OPOs, and the local NKF
Affiliates. In that study (figure 1), 86 percent of OPOs thought organ donation
was greater than "5", as did 60 percent of NKF Affiliates, but only 34 percent of
the public service directors thought it was greater than "5" (88).

Public service directors have a good sense of the importance and visibility of public
issues in their community. We must compete for their attention. A study by

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Needham, Porter, Novelli in 1985 for the National Heart, Lung and Blood Institute
indicated that public service directors receive 15 public service spots a day. They
have 175 different spots in their rotation at all times (89).

We cannot control access, we can only compete effectively for it. One of the
means of competing most effectively is to know where. the control actually is and
how best to influence it. That rests with the group referred to as "gatekeepers".

"Gatekeepers" -for Public Education Campaigns

"Gatekeepers" are people who control access to the mediums through which we
seek to reach the public. Every medium has its'gatekeepers. Every group of
gatekeepers has a set of rules and regulations for access. They also have ideas
and preconceptions about what interests and benefits their public.

Schools have superintendents and boards of education; newspapers have editors;
service clubs have program chairmen; health fairs have committees; drivers' license
bureaus have supervisors and television has public service directors. All of these
people are in positions to decide whether or not our messages are used. We
cannot reach an audience without going through these people. Yet, organizations
which have a mission of educating the public usually do not find out what these
people think before they create their campaigns. For instance, not one
organization involved in producing television public service spots about organ
donation is a member of the National Broadcast Association for Community Affairs
(90).

Since television is so vital to the organ donation public education effort, the results
of the NKF survey of television station public service directors (mentioned earlier)
can be informative. In addition to specific questions, the respondents were also
asked for advice (appendix 1) and several responded on the need to listen to them,
to public service directors. For examp.le:

0   "Get to know the public service director and station policies on PSA
   placement."
o   "Make a personal contact with the Program Director and person
   responsible for PSAs and get to know them. Find out what they want
   and need and work with them."
0   "MORE organizations should do research so they provide airable
   spots!!"(91)

The most important survey result was the overwhelming sentiment that television
campaigns should be local: 92 percent of the public service directors responding
said the "local angle" of a spot was the most important, or very important factor in
their decision to allocate air time. Only 18 percent of the respondents thought a

107


nationally produced spot was the most important, or very important factor in their
decisions about air time (figure 8) (92).

vllhen evaluating available spots, respondent& said, they base their decisions on the
local aspects of the campaign and the PSA itself. It also helps to have the spots
delivered by a local representative: 54 percent of the respondents were more likely
to use a spot if it was distributed- by hand or by a local representative of the
organization. Only 19 percent said they were more likely tc use a spot delivered
by mail (figure 6). Some of the comments make this point very strongly:

0    "Our license and mission is to serve our local audience in terms that
    relate to their lives and needs."

0    "Testimonials from recognizable, hopefully local, recipients of
   transplants would play well here."
0    "Local angle and local contact numbers are very important to my
    station."

o    "Try to localize.. . . This way the frequency of air time increases." (93)

The results of this survey are entirely consistent with the survey of 30 public
service directors done in 1985 by Needham, Porter, Novelli which found: "When
participants were asked to specify what criteria they use in deciding whether or
not to air a PSA, comments by nearly three-quarters of the overall sample related
to local impact." The study said that play on a station can be increased by:
"producing a greater number of locally oriented spots containing a reference to
where people can get more information, sending spots with local tags...." In
general, the 1985 survey concludes: "Seven out of ten respondents say that local
contact influences them either to `a moderate or great degree" (94).

National organizations may place too great an emphasis on network television's
participation in campaigns. The networks have their own gatekeepers, rules, and
practices which work to the disadvantage of issues like organ donation. For
example, local stations can "cover" a network public service spot with a local spot
or a local commercial (95).

There are spots which are placed in "non-coverable" slots, broadcast over every
station on the network. However, access to those slots is extremely limited. ABC
network limits such spots to Media Partnership or Ad Council campaigns, and use
10 to 15 each week. All others must compete for the 20 to 30 slots available, all
of which are "coverable" (96). It is possible for local stations to pick up network
spots. They can use them as they are broadcast, or get them "off line" from a
network feed of currently in-use spots. However, the survey showed that 83

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percent of focal public service directors ~ "seldom" or "never" pick up network
spots, and only 3 percent of major market public service directors "frequently" pick
up network spots (figure .3) (97).

Ti3ese results clearly suggest what any cause-based group must do to reach
intended audiences. The gatekeepers.are in charge. Getting to know them and
working with them is vital. The best message in the world, with the best content
and the best production, will be received only if the gatekeepers allow it,

        National and Local
Public Education Campaigns on Organ Donation

The national organizations which produce public education campaigns on organ
donation must maintain a spirit of cooperation. An exchange of information on
plans and campaigns should benefit each organization without compromising any
group's ability to meet their own internal needs. For instance, each organization
will have a unique set of needs in addition to the goal of increasing organ donation.
Some of those needs are:

0  to create public awareness of the organization and its value to the
    community;
. .o    to inspire public support, including financial support;
0    to establish a programming presence, so the public understands what
    funds accomplish through the organization;
0   to inspire and motivate the organization's own volunteer corps, or
    prominent supporters;
0    to use resources available to it; such as an offer of participation from
    a celebrity;
0    to demonstrate an ability to produce materials of high quality which
    impress volunteers and supporters.

Secondary goals (after the primary goal of increasing organ donation) are perfectly
legitimate and often complement the mission of the education campaign. It is
impossible for an organization to ignore all of these factors in planning a campaign.
The problem arises when these things create pressure on the campaign, which may
result in higher costs, production problems, or a lack of clarity in the message.
This can compromise effectiveness of a campaign. However, when these needs
are acknowledged and dealt with honestly, the results of a campaign can still be
good.

Another common problem in campaign creation is the tendency to over-produce
materials, especially TV spots. High quality does not necessarily mean expensive
or glitzy. When creativity is allowed to charge ahead unrestrained, production can
get out of hand very rapidly. Four color printing, glossy paper, celebrity studded

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TV spots, elaborate sets, and fancy video graphics, all make things impressive.
However, the real utility of these tactics must be measured against the goal.

Again, our advice on television comes from the public service directors who were
asked to rate factors in the effectiveness of TV spots.. 49 percent said emotion
was most effective. 44 percent said education was most effective. Their
comments advise staying away from the fringes of advertising. Shock was listed
as only 10 percent effective (figure 8). Some of their comments were:

0    "Don't rely on celebrity - - confront the basic issue head-on."
o     "Don't be clever - - remember that PSAs are aired over and over.
    Don't be melodramatic. ..`I

0    "That the announcement be very simple, clear, easy to understand."
0    "Simplicity is best."(98)

One of the principal responsibilities of the national campaign planning process must
be the absolute commitment to accuracy. The television networks demand that
complete justification accompany the script of any TV spot they are asked to run.
All claims have to be substantiated. The networks will reject a spot which cannot
fully explain why it states what it does. This is especially true for the national
campaign which will be implemented locally.

Another ingredient of any campaign is evaluation. In the survey of 14 area OPOs
and NKF Affiliates, the respondents were asked if they routinely evaluated the
effectiveness of their campaigns. 69 `percent of the OPOs said yes. 54 percent of
the NKF Affiliates said yes (figure 2) (99). Evaluation is harder on a national basis.
However, the evaluation that matters most is the rate of organ donation. 1990
results not withstanding, we haven't been doing very well in the past few years.

Consistency is another issue which gets considerable attention from organizations
trying to reach the public about a single issue. 64 percent of the OPOs in the
survey reported that they make an effort to be consistent within their community.
54 percent of NKF Affiliates reported a similar effort (figure 2) (100). Nationally
there is almost no consistency and no formal mechanism at present to strive
toward. Since the evidence presented here suggests that local campaigns are
more utilized (certainly on TV) the need for locally consistent messages is
reinforced.

One of the most repeated criticisms of past efforts in public education on organ
donation is the lack of message targeting (101). This is very hard to remedy.
Mass appeals' can't be segmented by audience under our circumstances. We can't
control our placement on television. Since we rely on free public service time, the
only group we can be sure to target are insomniacs (since late at night is a
common time slot for public service). One mass campaign can't target minorities,

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or women, or young people. If the desire is to specifically target such audiences,
the evidence tells us that it will be necessary to design unique campaigns for them,
and deal with the gatekeepers in a specific way.

Mass campaigns, especially on television, reach very. large numbers. They are
designed to appeal to the population in general. Their audience is the
250,000,OOO people who live in the United States. If that represents 75 to 80
million families, our statistics indicate that less than 1 percent of those families will
be confronted with an actual organ donation situation next year (102). So, 99
percent of the people we are targeting for our mass media campaign will not
directly be in a position to help us meet our goal (increasing the number of
donations).

Allocation of scarce resources is one of the decision making processes the
transplant community goes through every day. No organization has enough
money, time, or volunteers to do everything necessary to dramatically raise the
rate of donation. Therefore, we have to make choices. The types of public
education campaigns we do is one choice. Allocation of resources between public
education and professional education is another. Some of the information
examined in this paper may prove helpful as we face those choices.

Howard Nathan states: "Educational efforts directed toward the general population
with an accent on minority groups are capable of producing a modest increase in
actual donors [emphasis added]. Educational programs aimed at increasing the
organ donor pool should design methods. to identify these individuals (missed
donors) . . . .improvement in donor recognition.. .could be achieved by creating
focused educational programs targeted toward health-care professionals in
hospitals identified with the largest `donor gaps'" (103).

The Institute of Medicine Study also focuses on the dynamic in the hospital when
the actual determination of donation is made. It states: "Cadaver donation
involves a complex process between the attending physicians and nurses caring for
the recently deceased potential donor, the organ procurement professionals and
the family of the deceased. The initial encounter with the family is critical. It is
most effective when made by professionals who show respect to the family and
communicate a sensitivity that acknowledges their grief. However, if the requestor
is uncomfortable, or lacks answers to important questions, the result is often
refusal" (104).

Again, Howard Nathan points out that in Pennsylvania during his study, there were
147 actual donors, 91 refusals and 114 to 215 families who were never asked
(105). If the real determination of success for organ donation education efforts is
in the number of organs donated, the problem is apparent in that statistic.  Polls

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showing general public awareness deal with' a universe; 99 percent of which will
not be in a position to decide about organ donation.

The Institute of Medicine studied only the renal program. However, it reflects the
entire field of transplantation when it states: "The committee wishes to underline
the urgency of increasing the organ donor supply as the central issue in making
kidney transplantation available to increasing numbers of ESRD patients. Public
and professional education, recommended consistently over the years, should be
continued, but working assumptions should be re-examined and efforts possibly re-
focused and the effects on increasing the a.vailability. of organs should be
monitored closely" ( 106).

Conclusions

A review of public education in organ and tissue donation, and the concepts
described in this paper, lead to the following ccnclusions about the transplant
community's need' for an effective relationship with the American public.

1) The goal of public education in organ and tissue donation should be:

To maintain a level of public awareness of organ and
tissue donation which will favorably dispose families
toward donation if they are ever asked to grant
permission.

The elements of the "level of awareness" which will pre-dispose families are a
sense that:

a)
b)
cl

d)

Transplantation is "good".
Organ donation is the "right" thing to do.
When a person dies "senselessly", the only "good"
possible is organ donation.
The person who died, a "good" person, would have
wanted his or her family to do the "right" thing.

The most important factor in predisposing families toward donation is knowledge
that it is what their loved one would have wanted (107). The best source of that
knowledge is a family discussion of organ donation and transplantation.

2) We must realize that organ donation is a unique health education concept.
Some of the factors which make it different are:

a)  It is not something you can do yourself.

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b)  It is not something that benefits you at all.
cl  You cannot cause it to happen.'
d)  It depends absolutely on someone else doing something.
e)  It is extremely uniikely-.
f I  It only occurs after you are dead.

Our educational planning should include these realities.

3) We stiould set much more realistic goals for public education based on the
following ideas:

    a)  In organ donation, public education is a supp.ortive, not a
      primary activity.
    b)  94 percent awareness means the main job is
       maintenance.
    cl  We shouldn't strive for total understanding of the
      concepts because they are too:
       i) complicated
      ii) negative
      iii) easily misinterpreted
    d)  We should stick to basic, easily assimilated, simple
     themes and repeat them without the details.
                                         /
4) We must invest our money and effort carefully, thoughtfully, and honestly. We
shoutd always know why we are doing things and what we expect to accomplish.
To the extent we want to focus solely on increasing organ donation, these
concepts should be considered:.

a)  The resource investment mix between public and
  professional education should be carefully analyzed based
  on the likelihood of positive results.
b)  National television campaigns are very expensive and not
  likely to be cost effective or produce significant results.

5) Local public education campaigns and activities are much more important than
national ones and will bring better results.

al  The vast majority of educational message "gatekeepers"
  are local.
b)  These "gatekeepers" overwhelmingly advocate messages
  that have a local angle and local focus for action.
c)  The national role should concentrate on creating model
  materials and concepts for local adaptation and use.

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    d)  Local campaigns should be broadly based using a
     cooperative.approach among the local transplant groups.
    e)  Consistency within a community is important;
     consistency with the rest of the country is less so.
                                                  .
Television is usually our first thought when we want to reach the nation.
However, the access to national-television is extremely limited. There isn't much
network time, most of that time is committed to a few select issues, and stations
cover national spots `with local ones anyway.. To communicate with the American
people through public service announcements,-we have to concentrate on working
with local TV stations.

6) Public education encompasses a large variety of tactics. It is not limited to
mass media.

a)

b)

cl

d)

Media campaigns should be supported by local
community involvement. TV Public Service Directors
advocate events and always want further information
resourcesto back up spots they play. They even suggest
asking them to co-sponsor events.
Health fairs, donor card signings, speakers bureau, work-
site campaigns, and countless other tactics can be the
most effective means of reaching people.
Cooperation and efforts toward a consistent message are
very important on the local lavel. Organizations can
share the planning and cost.
There should be standard ways for the public to request
further information or contact .with knowledgeable
representatives of organ donation.

Hands-on public contact is time consuming but it reaches people directly and
involves them in thinking or talking about organ donation. Speakers bureaus and
health fairs reach relatively few people yet they cause people to focus on, and
possibly to talk to their family about, organ donation.

7.) We should spend more time realistically evaluating our educational efforts.
Each campaign objective should be examined carefully:

a)  Though the primary goal of education is raising the rate
  of donation, other goals such as the organization's need
  for recognition are complementary and perfectly
   reasonable.
b)  Secondary goals are valid; however, they shouldn't
  predominate.

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Cl  Secondary goals sometimes raise the cost and guide the
  creative process in campaigns..

It is reasonable for an organization to expect .its public image to be enhanced by
effective educational campaigns and its own volunteers `and supporters to be
inspired by its campaigns. However, accomplishing those secondary goals doesn't
mean that the mission of increasing organ donation has been advanced.

8) Donor cards, a long-time tool of public education programs, should continue to
be distributed widely. Though signing a donor card is part of our message to the
public, they are primarily a catalyst for family discussion.

a)  The fact that donor cards are legal documents should be
  de-emphasized. Their use is in awareness, not in
  recovering organs legally.
b)  We should focus on who witnesses. a donor card signing,
  and urge that it be a family member.
cl  Donor cards, or notations on drivers' licenses are very
  important opportunities to reach the public.
i)  We should make drivers license examination
   locations part of our public education
    program.

ii) We should educate young people when they obtain
  their first license.

9) We should realistically analyze the audiences we seek to reach with our
educational messages. Our mission is not to educate the American people. Oui
mission is to increase organ donation. Therefore,

a)  It is reasonable to concentrate first on the people with
  whom we have the greatest chance for success: the
  people most likely to donate.
b)  We want to reach the 12,000 or so families who will
  face, or could face, a decision about organ donation next
  year. We don't know who they are, but thinking .about
  them might help us do a more effective job of education.
cl  The more we know about those 12,000 families,
  including projection about which ones are likely to be
  asked and which ones are likely to say yes, could be very
   valuable.

10) We need to target some audiences even though we know they are less likely
to donate today. This is especially true of African Americans. Their need for

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organs is clear and so is the need for them to donate. But, planning sudh
campaigns must include some special elements:

a)  Campaigns targeted at minority audiences are harder.
                                                             
b)  They are much less cost-effective.
c)  The primarily ,White -leadership of the transplant
  community needs additional. help, advice and
  participation, before it can produce effective targeted
  campaigns.
d)  Adequate resources must be devoted to such a targeted
  campaign. It cannot be a slight variation of some other
  effort. It is worse to do an inadequately planned or   '
  planned or executed campaign than-to do nothing.
e)  The results of targeted campaigns should be evaluated on
   their own criteria.

All educational planning must take into account the special circumstances of the
minority community need for more organ donation.

11) We must focus on realistic expectations. We should be creative, enthusiastic,
optimistic, and persistent, but our sights should be firmly set on what is attainable.

a)

To most people, our issue is a "5". AIDS, drug abuse,
education, the homeless,' jobs, crime are all `more
important to somebody and some are more important-to
everybody. The public can focus on only a few "10's"
and organ donation isn't going to be one.

b)

Networks devote their available public service time first
to the Media Partnership, the Ad Council, their own
"house" campaigns and then to everybody else.

cl

Effectiveness depends totally on utilization and utilization
is most often out of our control. We can target an
audience, but, if we can't control placement, we can't
expect to reach the targets.

d)

We should resist the temptation to buy television time or
recruit someone to buy it for us. A paid campaign would
be extremely expensive, could not be sustained over a
long period of time, and it would destroy our ability to
get free public service time in the future.

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e)  We must educate the "gatekeepers" about whom we
  know very little. They decide what reaches their
   audience.

12) An intensive study of the current donor pool should be undertaken.
Information about today's donors, potential donors, and unrecognized donors can
help us anticipate tomorrow's needs and opportunities.

                                                  
a)  Which families get asked about donation today and
  which do not? -
b)  Which families say yes to donation and which say no?
cl  Of the families not asked, are there some likely to say
  yes and some likely to say no?
d)  Which families are most able to incre.ase the number of
  organs donated? Can we target educational activities at
   them?

13) The next public opinion poll done by the transplant community should examine
the impact of -inaccurate-or bad publicity on public attitudes toward organ
donation. In 1991, organ donation was falsely portrayed in several popular
television series. What really resulted from that?:

a)   Is bad fiction taken for bad fact?
b)  Can even outlandish presentations stimulate discussion
  and interest in organ donation?               

Cl  How can the transplant community use such portrayals,
  seen by millions, as' a catalyst for positive results?
d)  How should we respond when these things happen?

A 1985 Gallup Poll showed that 92 percent of the people who were aware of
transplants heard about them on television. If such dramatizations are going to
occur, it might be possible to turn them to our advantage.

14) A national public education consortium is needed. Exchange of information on
plans and ideas would be very valuable to every organization which invests time
and money in organ donation education. The consortium should be a
clearinghouse created solely for the exchange of information:

a)  It should not conduct its own programs.
b)  It should not raise money.
cl  Its administrative expenses should be shared by the
  member organizations.

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d)  It should concentrate on how to facilitate better
  educational campaigns on the `local level throughout the
  country.
el It should provide a regular forum for discussion of
   member's initiatives.

The UNOS clearinghouse could easily be `expanded to serve as the focal point for
this consortium.

15) The Federal Government should not p1ay.a visible role in the public's
awareness of organ and tissue donation. Thetransplant community understands
and appreciates the vital role played by the government but it may not be
productive to associate the government with organ donation in the public's mind.

a)  Among some, a distrust of the medical establishment is a
  major barrier to accepting organ donation. If we add
  distrust of the government to that equation, the situation
   could be worse.
b)  The government will have a distinct role in furthering
  organ donation education; however, it should be a
  supportive role acting through other organizations.
cl  The visibility of organ donation education should remain
  with the private sector even when actual programs are
  funded by the government.
d)  Any perception that the ,government is monitoring who is
  willing to be a donor, or who is or is not donating is a
  very strong negative;

In this sensitive personal dynamic, the role of the government has to be
circumspect. This is not a criticism of the many ways government facilitates organ
donation. It just has to be careful in' the fragile relationship between organ
donation and the public.

16) Organ donation has always rested on a foundation of pure altruism. The "Gift
of Life" has always been a freely given gift. The continuing shortage, however,
has led some people to begin considering non-traditional approaches. Our
educational campaigns and efforts should not be modified now. However, if we
consider non-traditional approaches, we should evaluate them from a public
reaction perspective.

a)  A study should be undertaken of the public reaction to
  concepts such as financial incentives for donation,
  maintaining a registry of potential donors, requiring a
  decision about organ donation at some point (drivers'

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  licensing or hospital admission) and presumea consenr.
b)  Full debate and discussion should ,be encouraged on all
  these non-traditional approaches before they are tried.
cl  Pilot trials of these approaches should be conducted to
  test their effectiveness and acceptance by the public.
d)  Relevant laws and regulations should be modified so that
  the trials can be conducted thoroughly.
d  Intensive effort should.go into.the public relations
  aspects of each step in this process so that decisions are
  made with'the attitudes of the public as clearly in mind
  as possible.

SUGGESTED RECOMMENDATIONS
FOR TliE SURGEON GENERAL

1) A national consortium of organizations doing organ donation public education
programs should be formed under the auspices of the United Network for Organ
Sharing.

2) The Ad Council should be asked to adopt organ donation as a major campaign.

3) A national television campaign should not be developed unless organ donation
is adopted by the Ad Council and funding is available through its sources.

4) The.Congress should authorize the Department of Health and Human Services
(DHHS) to conduct pilot tests of non-traditional approaches' including financial
incentives.

5) The Division of Organ Transplantation (DOT) should make "seed money" grants
available for the formation of local coordinating groups.

6) The DOT should fund in-depth studies of the public's attitudes toward non-
traditional methods of facilitating organ donation.

7) The DOT should fund demonstration .projects on educational programs targeted
at minority audiences.

8) The DOT should fund an in-depth study of the current donor pool to project
similarities and differences among the four groups of families (asked and said yes,
asked and said no, weren't asked and would have said yes, and weren't asked and
would have said no).

9) DHHS should indicate the special circumstance of organ transplantation, that
donated organs are required before medical treatment is possible, and therefore

119


creates a unique `need to include public attitudes in planning government sponsored
medical care initiatives.

10) DHHS should form an inter-agency group to consolidate information on
transplantation and organ donation programs of various government agencies.

11) That inter-agency coordinating group should promote the need for a public
awareness focus in the scientific and pubiic health work being done in
transplantation.

12) The Secretary of DHHS and The Surgeon General should continue their
leadership in regard to this issue and stimulate greater attention to it within the
government.

13) The Surgeon General should sponsor a follow-up workshop in 2 years to
evaluate progress made on implementing the recommendations coming from this
workshop.

120


Appendix.1

The National Kidney Foundation, Itic.
Survey of Televisioc "Gatekeepe'rs"
      April 1991

SURVEY CdMMENTS

Question: What advice would you give to organizations planning to produce
television public service announcements on organ donation?

FORMAT

-Generic without time or date. Put all time. lengths (to fill variety of
station formats) on one reel, that is 10, 15, 20, 30, and 60 second
formats. Do variations so several spots can rotate without spot
getting "tired". _

-Supply varying lengths of spots but not several 30 second spots with
different themes.

-Be sure to produce 60 and 20 seconds as well as 30 seconds.

-Often P.S. Directors are limited by how many spots of a certain
length are available in their PSA rotation. You increase your chances
for air time by giving the P.S. Director options.

-At our station there is less competition for air time for PSAs other
than 30 second. Short spots fit better--20, 15, even 10 seconds.

-Guidelines for PSA's from WTXF-FOX 29: We air 10, 20, 30 and 60
second PSAs in accordance with daily availabilities. For consideration:
Send 1" videotape reel accompanied by cover letter, IRS non-profit
tax-exempt number statement, scripts/storyboards, and background
information. Include full name and address of organization and
contact person. WTXF-TV must have this information to process and
to issue monthly performance reports. Don't send slides. Allow for a
g-week processing period. All tapes are screened for content and
technical. If selected, the public service announcement airs for 6-
months or until the specified kill date. A monthly performance report

121


will be sent to organization providing contact information. Please enclose a
self-addressed stamped envelope.,

-Offer 1-3 different lengths and make the spot so it will hold the
interest of viewers.

APPROACH

-Keep it simple-provide a call to action for your viewer.' Don't try to
give too much information in :30. More organizations should do
research so they provide airable spots!!

-Include a racial balance, i.e;, it affects all races and socio-economic
backgrounds. There's a concern for lack of minority donors.

-Sensitive subject; personal...some might think talking or "body parts"
too personal. A sensitive subject needing a sensitive approach.

-Spots must be generic, cannot ask for specific donations.

-Make a generic spot with no end date.

-Make good spots but don't try to get too technical as people don't
understand technical side of most things. Also make spots kind of
simple and not too deep.

-Get creative and make sure'you have universal appeal (to all age
groups) or produce different spots aimed at different demographics.
Include local phone number on spot, if available.

-Be creative with your presentation of the message. Be careful to
make the spot "work" in all parts of the country (urban/rural). Make
part of the spot a "call to action" to get the viewer to do something,
or simply to be more aware.

-Be sure to appeal to the minority audience.

-Keep it simple so it can have a long play.. *repetition is your best
promotional weapon when time is needed for people to decide to join
the effort.

-Make sure the spots are well produced and don't use "talking heads",
there is nothing more boring than a spokesperson on camera talking
for several seconds.

122


-Offer the' viewer a ,sense of revelation while communicating `the
information! Show. real life sit-uations/happy endings?/not happy
endings? More information needed for general public to get
comfortable with idea.

-Although I indicated that education signals effectiveness, keep in
mind that .education'is only possible when you have the public's
attention. How.? Emotional, shocking, humor, etc.

-Include the following: emotional (touching, tear jerker, cute,
shocking, etc.) music that demands your attention and holds, it, fast
moving - all information .quick and to the point. 30 second spots,are
best.

-I would present it as real and graphic as could be done, along with
someone who is in the public eye.

-I have done a half-hour program on organ donation and am
intellectually convinced myself. I think the BIG problem is that of
describing what DEAD is.. some organs (all?) may be harvested prior
to what people believe DEAD to be! This is a big problem. The organ
donation program really must depend on an enlightened, courageous
and informed person. Even the best of us wince a bit!

-Produce it in a way where it is informative and educational yet
entertaining. Too often I find PSA dull or slow-paced which entices
viewers to switch channels. Good video and music helps.

-Show how simple it is to be an organ donor. Explain the steps
needed to be an organ donor. Education on how to be a donor.

MESSAGE

-Testimonials from recognizable, hopefully local recipients of organ
transplants would play well here. Recipients expressing the quality of
life slant. Also, testimonials from family members of organ donors.
Again, using local people.

-Testimonials by organ donor receivers; how the organ donation saved
their lives, for example.

-Show more than a "talking head". Give good reasons why the general
public should support this effort.

123


-Use the'Human Interest ("This could happen to `you/someone you
love" angle.)`

-Address the (hopefully false) contentionthat families of organ donors
receive unanticipated bills to cover expense of removing,
transportation and processing donated organs - bills which previously
were assumed to have been the responsibility of the donee.

-Use faces - maybe a child's true story about receiving an organ so
he/she could live.

-Find local recipients willing to be interviewed. They're much more
interesting than "celebrities". When there's a local story call the local
news media that day.

-Let people know how vital it can be in saving a person's life, and
how easy it's to agree to be an organ donor on your driver's license. I
would probtibly -provide more time for kidney disease PSAs if the PSA
demonstrated j&t how many people suffer from this problem and how
life threatening it is.

-The people I know who don't like the idea of organ donation think it
is "sick" to have their organs removed, even if they are dead. If you
can get around this attitude, it .will be a success.

-Perhaps testimonials from prominent recipients of organs. Or an
emotional plea from someone in need - emphasize the waiting anxiety.

LOCALIZATION

-Provide useful materials to local chapters, so they can be localized.
Our license and mission is to serve our local audience in terms that
relate to their lives and needs.

-Localize with local phone number. I would encourage the
organizations to find a local angle, make the spot hard hitting and
emotional and have a media showing to local stations to debut and
distribute the spot.

-Appeal to a large variety of people and localize it (tag at end). We're
a small town and sometimes these services are not available locally --
an 800 number would be nice.

124


-Try to localize, by leaving room for a.local tag OF putting local phone
numbers.`This way the frequency of air time increases.

-A brief explanation. A toll free numbe-r to have more information sent
to them. People are more likely to respond `to a .phone number.

-Local first! Red Cross encompasses all kinds of organ donations.
DON'T OVERLAP!!

PRODUCTION

-PSAs get the most airtime here if they are unique or inventive in
some way. Produce a spot that will make me notice it -- and the
audience will too.

-Maintain high production standards, i.e., .proper lighting, good visual
effects, correctly.spelled. Also, make the spot interesting and appeal
to viewer's emotions.

-Make sure the quality of the tape is superb! High broadcast quality
with a message that a wide audience range can relate to.

,-Contact with station; quality production; send it in the format that
station prefers.

-det best script and production values possible -- emulate successful
Cleo award-wining commercials and win over PSA Directors to your
cause.

-Quality of the piece -- audio-visual. Professional voice is a must. This
is the first thing that either makes or breaks a PSA.

-Keep production values high and lighten the content to whatever
,degree possible! Give a choice of videotape format -- be very specific
about kill dates.

DISTRIBUTION

-Send script and storyboard with tape -- don't ask for tape back, make
it easy for us because we receive several PSAs a day.

-Send storyboards with tape.

125


-Don't send VHS. Keep dealings with the station short.

-Make personal contact with the P.D: and person responsible for PSAs
and get to know them, find out what they want and need and work
with them. Inform them about your cause and.how it impacts on your
area. Make them a partner, as much as they desire.

-Do something to make your PSA special -- packaging, follow-up
phone calls. etc. Create an exceptional on-air product.

-Get to know the public service director and station policies on PSA
placement.

-Do not rely on PSAs only -- try to tie spots locally through
news/health reports.

-Send cover letter stating purpose of spot, importance, rationale and
storyboard.

-Call and let us know the PSA will arrive and after we receive spot do
a follow-up call.

-It really helps to send accompanying information, including what the
PSA is about, how long it should air, who the tar.get audience is, the
name, phone and address of a contact person.

-Send tape to station 3 weeks prior to air date. Select a specific
campaign time frame.

OTHER SUGGESTIONS

-Solicit the assistance of a local PR or media firm to develop a specific
campaign: 1) awareness; 2) local examples of help; 3) future plans or
developments which will provide local citizens in all demographic
groups with a better life.

-I would advise you to solicit the help of an ad agency who donates
their service to non-profits.

-Make sure not sponsor-ridden, i.e., "this message brought to you
by...,etc."

126


-Plan a local campaign using all rriedia, a local celebrity or influential
person and a hospital or major medical organizatiqn sponsoring. it.

-Please try to work. with a IocSl TV network affiliate to sponsor your
campaign. Have your local cable (TV) company co-sponsor, if
possible, so that the PSAs run on a variety of channels in addition to
the Affiliate using one of their news .anchors. You can often get news
series out of a station's sponsored campaign and much better PSA air
times and frequency.

-We need more Spanish PSA (Spanish language) spots, and alqo
involve all Radio Stations (Spanish). See& to ine that radios are the
forgotten on& I

-No commercial mention of any kind in either audio or video (even if a
sponsor is underwriting the production cost of the spot).

-Do not promote fund-raising efforts (We're non-profitj.

127


TaMe #l $raphlc Representation)

35,
- .'
25



20

  10


  5

YEARS    1979 1990    1991

NEWSPAPER ARTICLES ON
TRANSPLANTATION 1979-l 990

                                                     -         I

1992    1993    1994    1995    1999     1997    1999     1999    1999

Sources: New York Times, Wall Street Journal, Chris&m Science Monitor, Washington Post, Los An&es

NatIonal Kidney Foundation, Inc. Survey of Newspaper Articles Relating to Tran~plantetion 19794990   
                     April 1991


Table #2

SUMMiWY OF ONLINE SEARCH OF .THE READER'S

GUIDE TO PERIODICAL LITERATURE, 1983-1990
     Topic: Transphtation

1983

1984

1985

1886

1907

1988

1989

1990

jqUMBEROFARTICL="

       89

       86

        45

       69

72

95

57

70

o General transplantation articles posted.

129


Figure Ul

VISIBILITY OF ,&ZGAN DONATION

       IN 14MARjKETs
(PERCENTAGEATEACH RATrNG LEVEL)

LCALE



"10

9


8

NKF
AFWLIATE~
N - 14


0%


7

0

ORGAN PROCUREMENT
ORGANIZATIONS
    N - i4

  7%

  ,O

  29

PUBLIC SERVICE


N - 14


  o?!

  0

  0

7      36          43             17


.6      21         i4             17


5      21           0            22


4     0           7             17


3      7        ,O             11


2'     0           0             11


1      0           0             5

. ' 10 I E&heat rate of riribllity

L

Firtlonal Xldney Foundation, Inc. Sarvcj on Vbibility on Television Gatekeeper8 and m AfBlhtea
     and Organ Procurement Organizationa Regarding Promoting Grgan Donation
                     April lam

130


NKF AFFILIATE' & OPO ASSE,SSMtiNT

OF COMMUNITY PUBLIC EDUCATION EFFORTS

IN 14 MARKETS

Make Effort for Consistency
                Yes
                No

50%         64%
46*h         43*/o

Evaluate Effectiveness
                Yes
                No

540?         69%
46%         21%

xmtion8.l Kidney ?OudeiOrh, Inc. sumey of NSF Aflue- md orlrp Procurement orqrniutrorpr
         Regudlaq Romoting OrgM Donrtion
                    April1891

131


Figure 1)s
LOCALPUBLIC SkRmCE .DIRECTORS
                                                  
                                

REPORTING ON PICKING-UP. NETWORK SPOTS

NTLY

MAJOR MARKETS (N~35)

SMALLER MARKETS (N=243)

TOTAL (N=278)

96

3        I4     18

                                         .

44       140    `59

                                     .
Qj       154   77

.17%    155% : 28%[

            83%

Wionrl Kidney ?oun&tlon, Inc. Sumey of Teledaiom Gatekeapcrr Regudlng Promothg Organ
                         Dondon
                  ~prir iemi

132


VISIBILITY OF ORGAN DONATION
ACCORDING TO PUBLIC SERWCE
       DIRECTORS
       (N=278)

25

1 2 3 4 5 6 7 6 9 10

100


90


60 i

70

60 --

50 --

YES      NO     SAME

Increase In past few years

NMknr) KHnoy FouMWfh Inc. Suney on Tetevlston Gatebepers Ftegarctlng Promoting Organ Donatkn
                      Aprtll991


.Flgure #!i

1       2      3     4      5      6      7      6      9      10

IMPORTAhJCE OF ORGAN DONATION
According To Public Service Directors
       (N=278)

Percentage at each rating level

1 o most important (AIDS RANKED #l)


F lgute #6

LIKELIHOOD OF PUBLIC SERVICE DIRECTORS

`TO USE SPOTS

As Affected ,By Method of Distribution

BY AN AGENCY     BYHAND/
              BY LOCAL REP
    5%            54%

BY MAIL       ALL EQUAL

  19%            18%

N8tbMl Kldnoy Foundation, Inc. Survey on Tebvblon Gatekeepers ROgardlng Promoting Org8n Domtbn
                     April 1991

135


25

20



15



10


5

NUMBER OF PUBLIC SERVICE
                 
ANNOUNCE~MENTS AIRED PER WEEK

(ti=278)

.

>.i         : :::: :        ,:,:..j..: .:. j.:::
                        . . . "`.::.. ::::..
             .:...:.::        ,,:y: .' . .
  . ..`.           . . . .         ,,'  . . . . . .
                         .:.. : :

40     l&20     -30

NUMBER OF PSA

    4660     a60

STAllONS SURVEYED

136


Flgure #8

PUOM~
  ioo


   90


   80


   70


   60


   50

IMPORTANCE OF VARIOUS FACTORS
   IN OBTAINING AIR TIME
       (N=278)

m NOT VERY/NOT AT ALL       m MOSTNERY FIGURE


REFERENCES

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138


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139


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140


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                              141


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142


98. National Kidney Foundation, `Survey of Television Gatekeepers, a April 199 1; Interview with
William Clotworthy; Interview with Harvey Dzodin.                                   

99. National Kidney Foundation,. "Survey of NKF Affiliates and Organ Procurement Organizations, "
April 1991.

100. IIt8 tional Kidney Foundation, "Survey of NKF Affiliates ana Organ Procurement Organizations, "
April 199 1.

101. National Kidney Foundation, "Survey of Television Gatekeepers; " National Kidney Foundation,
"Survey of NKF A ffiliates and Organ Procurement Organizations, " ApriJ.199 1.

102. Nathan, "Report of the Pennsylvania Statewide Donor Study, " Transplantation,. January 1331.

103. Nathan, "Report of the Pennsylvania Statewide Donor Study, " Transplantation, January 193 1.
                                                                          ,

104. Rettig and Levinsky, ed., "Kidney Failure and the Federal Government, * Institute of Medicine,
1991.

105. Nathan, "Report of the Pennsylvania Statewide Donor Study, " Transplantation, January 199 1.

106. Rettig and Levinsky, ed.,. "Kidney Failure and the Federal Government, * Institute of Medicine,
1991.

107. The Gallup Organization Survey for The Partnershb on Organ Donation, 199 1.

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