MOTIVATING THE PUBLIC:
APPLICATION OF LESSONS LEARNED TO INCREASING ORGAN
DONATION

Elaine Bratic Arkin, Health Communications Consultant, Arlington, VA

INTRODUCTION

The understanding of how to influence individual behaviors and societal norms has
increased dramatically over the past 20 years. Social and health change agencies,
marketers, and political image makers now use far more sophisticated techniques
and technologies. As a result, strategies designed to influence, or "manipulate,"
are increasingly successful. And competition for the public’s attention and interest
is fierce. The opportunity exists for the organ donor community to take advantage
of these advances in techniques and technologies.

Although the issue of organ donation is unique in many ways, there are some
factors inherent to educating and motivating the public that transcend the subject
matter. Some of these have emerged from behavioral, communication, and
educational research. Others have arisen through trial and failure--lessons learned
through Federal and other programs designed to produce behavioral change. The
behavioral intent of these programs ranges from the relatively simple
(immunization), to complex and difficult (breaking nicotine addiction). Others
require individuals to confront their own vulnerability to disease and death
(wearing condoms to prevent AIDS; seeking early detection of dreaded cancers).
Beyond a lack of awareness and needed skills, many of these programs also have
had to confront issues of denial, distaste, cultural taboos, and breaking with
closely held traditions. There are many examples to prove that such change is
difficult; there also is evidence that change is possible.

The purpose of this paper is to provide background information and to identify
issues related to the potential value of educational campaigns to increase organ
donation. This paper consists of four sections: the implications of selected
theories, models, and disciplines for organ donation programs; recommendations
emerging from analytic studies of mass media and other communication programs
and community-based research; selected case studies demonstrating different
approaches to motivating behavior change, and lessons learned from these
programs; and recommendations for the design of a program to increase individual
‘and social support of organ donation.
THE APPLICATION OF MODELS, THEORIES, AND DISCIPLINES

TO MOTIVATING ORGAN DONATION

Programs designed to promote behavior change are based on a number of models,
theories, and disciplines. Behavioral change models and theories outline the
complex process of individual change, diffusion theories explain how change -
moves through society.. Other models examine the factors that ease or block this
process.

For example, trial of a new behavior, such as family discussion and acceptance of
organ donation intentions, follows awareness, understanding, interest, acceptance,
personalization, and decision making related to the issue (1). The behavior change
begins with awareness and requires that an individual proceed through this series
of stages that culminates in behavior trial and change. Strategies to motivate
behavior change must address each of these stages in turn, as the individual
progresses toward the behavioral goal.

Public awareness of organ donation, which is very high (2), and favorable attitudes
toward donation, also widespread (3,4), are only the beginning. Public response to
the need for donated organs is still minimal. In 1987, Gallup reported that only 20
percent of those aware of organ transplants (84 percent of adults) had completed
an organ donor card (2). For an individual to take positive action, he or she must
become interested in organ donation, be convinced not only of its value but also of
personal relevance, and know what to do about it. According to several studies,
the public is still ambivalent about organ donation (2,3,4).

For organ donations to increase, there must be a supportive environment, in
addition to acceptance and action by individuals. No one acts in isolation. if a
person chooses to act, there must be positive support for that action to “take.”
That requires a positive family response to ‘raising the issue of prospective
donation, family acquiescence at the time of donation, and health system support
and utilization of the decision (1). Therefore, increasing organ donations will
require strategies that extend beyond educating and motivating individuals.
Concomitant strategies to assure that social support and health system support
exist to reinforce individual decision making also are necessary (5).

A large body of literature examines the diffusion of innovations, and how these
new ideas (innovations) affect individuals (their knowledge, attitudes, and
behavior) and social systems. Diffusion studies (6) look at what happens to an
innovation such as donating organs. Whether the innovation is accepted (the new
behavior adopted) depends upon whether individuals perceive it as beneficial, see it
as in accordance with their needs and yalues, find it easy OF difficult to understand
or adopt, try the behavior, and find peer acceptance of it (6).
Information about an innovation can be communicated in different ways: through
the mass media; community routes (e.g., schools, employers, religious
institutions); or through interpersonal contact (e.g., family, friends, teachers, health
care providers). Different means of communication are appropriate at different
stages of the adoption process. For example, the mass media reach. broad
audiences quickly, an effective way to introduce new information or influence
public attitudes. Community routes may be more credible. And, at the point of
trial, interpersonal discussions are more influential (6). This means that a
combination of the use of mass media to increase public understanding and
support of organ donation with the credibility of community programs and
interpersonal communication to provide motivation, skills, and support, is more
likely to increase public response to organ donation than the use of mass media
alone.

Communication of all types plays a necessary but not necessarily sufficient role in
producing societal change. Other factors such as community linkages, regulations,
social support, and incentives have an effect on the rate of acceptance of
innovation (7). Some of the factors that are influential in facilitating or blocking
behavior changes include an individual’s knowledge, attitudes, behavior, beliefs,
and values that affect willingness to change; the structure of the environment
(community) and an individual’s situation that facilitates or presents obstacles to
change; and the positive or negative effects of adopting the behavior (including
social acceptance and support) (7). For organ donation, an example of a barrier is
religious beliefs that may predispose an individual against donation. One structural
("environmental") barrier might be a lack of clear hospital policies about organ
donation, or lack of health care provider knowledge of the policies. Convenient
access to donor cards is one example of a factor that can facilitate a behavior
change.

~ Research indicates certain predictable patterns lead to large scale behavior change.
The behavior change moves through a population in "waves," as adoption occurs
first among “innovators,” then “early adopters."

A new behavior is first adopted by a small segment of the population (who are
referred to as "innovators”), and then by “early adopters” (8). These two
segments of the population are likely to be well educated, affluent, and keyed into
emerging trends through the media and in other ways. They are the individuals
who are most likely to be able to “afford” change, both psychologically and
financially. Organ donation appears to be attracting this population segment:
those most likely to donate are white, younger, more educated, and more affluent
(2,4).

it is the subsequent adoption of new behaviors by the “early” and "late majority”
that transforms the idea or behavior from an innovation to the social norm. Organ
donation has yet to reach this status. This middie, majority group tends. to
respond to interpersonal influences as much as or more than the mass media --
another indication that a combination of motivational strategies is called for at this
point (6). .

The remaining population segment, “late adopters," are those individuals who lag
farthest behind in change. Often referred to as the “hard-to-reach” within the
public health community, this group is more likely to be socially or economically
disadvantaged, underserved and/or isolated (8). While many public health

programs target this last, most difficult to influence group, organ donor efforts
should first seek to persuade individuals who are more likely, rather than less likely,
to participate.

Health education (8) and social marketing (9) both call for careful delineation of
target audiences, and a thorough understanding of the individual and the
community systems that either support or block change. Behavior change
strategies must appeal to what the target audience perceives as needed, valued,
and desired, and must be modified to be appropriate for different population
groups. Building strategies on the intrinsic value of organ donation, or the "public
good,” is not likely to be perceived as personally relevant for most people.

Health education strategies follow a continuum that culminates in behavior change
and reinforcement to perpetuate that change. Because health education programs
target different population groups and a range of precursors to change, a planned
mix of methods and strategies is employed. intermediate strategies leading to a
goal of behavior change address what must occur as prerequisites. For organ
donation, as for many other behavior change issues, interactions between (at least)
several people are required for the goal to be met. This suggests that there should
be coordinated strategies that target the different groups that must act for change
to occur. For example:

e the potential donor, because expressing one’s desires to donate to family
members, and signing a donor card, may increase the likelihood that a family
member will later agree to the donation (2,3,4).

© bereaved family members, because donation depends, in most cases, On the
‘action taken by a family member at the time of death.

e the health care provider, because the donation transaction depends upon the
capacity of the system to respond.

Programs addressing each target group require very different activities, routes of
communication, and messages.

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Social marketing practice has been broadly adopted by health and social change
agencies over the past 20 years. In addition to target audience segmentation, it
advocates the use of market research, message (product) testing, identifying and
addressing barriers and opportunities for change, planned communications, and the
use of incentives and/or the demonstration of benefits to stimulate acceptance of
behavior change (9). The focus for developing effective motivational strategies is
on identifying and relating to the needs, wants, and values of the target
population, rather than on the intrinsic values of the behavioral goal.

A recent turn-about in the commercial marketing field is “guerilla marketing” (10).
Guerilla marketing takes into account the vast number of advertising messages
bombarding consumers, especially through the mass media, and the proliferation of
mass media choices that have become available to consumers in the past few
years. This multitude of media choices has made reaching consumers through the
mass media more of a challenge. Therefore, guerilla marketing offers a broad
range of “new,” creative, non-media opportunities to expose consumers to
marketing messages, such as point-of-purchase (ads on grocery carts), promotion
at events (health fairs), or at other sites (product sampling at malls). Many of
these “nontraditional” methods have been the mainstay of nonprofit programs over
the years, especially community-based programs with small budgets and no option
to buy mass media time or space. Seasoned marketers recognize that there is
intense competition for the public’s attention, that message repetition through
many media carries the best chance of breaking through the information “clutter,”
and for repetition to work, the message must be the same no matter the medium.
These lessons are as important for increasing attention to organ donation as for
other topics (9).

It also is useful to review how public relations influences public opinion about an
organization, a program, or an issue. An informed, supportive public is the first
step toward increasing the number of organ donors. Public relations strategies are
designed to influence the public to support an issue, program, or organization. Its
practitioners continually monitor public knowledge and attitudes, recognizing that
public opinion is subject to continuing shifts, and that public perceptions of an
issue are not automatically accurate, or supportive, even if an issue is intrinsically
"good" (11). Public relations strategies that can influence public opinion include
actively seeking, in a planned way, to attract positive attention for an issue such
as organ donation, to build confidence in the sponsor (organization), to lend
credibility to the issue, and to gain governmental cooperation, or influence policies
and laws, as well as gain public support. .

One final field, health communications, is founded on a combination of behavioral
and communication sciences, health education and social marketing. Health

- communications, as practiced by U.S. Public Health Service (PHS) and other
national agencies, extends beyond information dissemination to include a variety of

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proactive strategies. Generally, these programs focus on what communications
can contribute to broad health and social issues, including to:

-raise awareness —

-increase knowledge

-influence attitudes

-demonstrate benefits of behavior change
-reinforce knowledge, attitudes, and behaviors
-demonstrate ‘skills

-suggest an action

-increase support and or demand for services (12).

Because communications strategies alone usually are not sufficient to produce
behavior change, these programs are frequently. components of interventions that
address other contributing factors. One example, the National High Blood Pressure
Education Program, is included as one case study in this paper. ,

Several PHS agencies include "media advocacy” as one of several communication
strategies. Media advocates focus on using the mass media as an arena for
influencing social and public policy (13). Very often, media advocacy messages
and strategies are designed to negate a nonsupportive or opposing force. Media
advocacy can be used to promote 4 point of view, and frequently is used to
counter alcohol and tobacco advertising and marketing. Media advocacy also can
be used to identify and counter misleading information. This attention-getting,
confrontational approach is generally paired with more positive public relations
strategies that are designed to seek media cooperation, and to prevent, or lessen,
negative media coverage, including misinformation.

Behavioral, communication, and other change theories and models, as well as
relevant practices, provide guidance for increasing organ donation.

1. Public awareness of organ donation is clearly insufficient to produce an
increase in donations. Knowledge, attitudes, interest, social support, and
skills must be increased to motivate organ donation.

2. Behavior change is the final stage in a continuum that begins with
awareness. To motivate behavior change, each stage in the process must
be addressed. Affecting changes in knowledge and attitudes is a
prerequisite to behavior change, but is not sufficient to cause change.

3. Effective motivation begins with the identification of each target group (e.g.,
individuals matching the profile of most likely donors) and designing
strategies based upon that group’s values, needs, and desires, rather than
broader perceptions of organ donation as the "right thing to do.”

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4. Market research isenecessary to understand what will motivate a specific
population group, what barriers to organ donation must be addressed, and
how best to reach a target group with an organ donor message.

5. Appeals based on research findings should be tested with the target
audience to assure relevance to their perceptions, values, and interests.

6. Tracking the public’s knowledge, attitudes, and behaviors also is needed to
assess whether and what changes are occurring, and to permit modifications
to motivational strategies as public views change. ~

7. For organ donation rates to increase, multiple target audiences (e.g., the
potential donor, family members, health care providers) must be addressed,
motivated, and provided with the skills and services needed.

8. Change strategies are needed to increase social support for organ donation
and decrease institutional barriers. Strategies directed at individual behavioral
change alone are insufficient to increase the supply of donated organs.

9. Planned strategies and consistent interaction with the mass media are
needed to increase supportive media coverage and decrease negative images
and misinformation, and reduce the attitudinal barriers that these create.

10. For organ donation to be repositioned from an "innovation" to a social norm,
a combination of mass media, community, and interpersonal communication
' strategies is needed.

In practice, the application of these theories and models does appear to strengthen
program effectiveness. The next section reviews how this application works.

CONCLUSIONS REGARDING THE DESIGN OF MOTIVATIONAL PROGRAMS FROM
SELECTED STUDIES

Summarized here are the findings from five selected analytic studies that
cumulatively reviewed dozens of communication and/or motivational and behavior
change programs focussing on a channel (mass media), or a topic (smoking, safety
belts), or audience (youth). Several of these studies included extensive interviews
with diverse experts. The conclusions reported here were commonly reached by
most of these researchers. Each reported many additional findings not included
here, but yielding a rich source of information for planning behavioral change
programs (14,15,16,17,18). Also summarized are the findings from the landmark
Stanford Three City Study (19).

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The Role of. the Mass Media

Uses of the mass media (television, radio, newspapers, and magazines) include
public service announcements (PSAs); news; message placement in entertainment
programming and films; production of television programming; paid advertising;
and publishing targeted magazines. Other options include newspaper supplements,
editorials and letters to the editor, media-sponsored events, and call-in talk shows.

One author concludes that the "...mass media can play an important but limited
role” (14). Among the functions that the mass media can serve is helping
establish awareness and knowledge of an issue, OF helping establish broader school
and/or community-based programs (e.g., bY raising public awareness of a program,
helping to recruit volunteers, promoting materials and events, reinforcing
educational messages, and generating support for changes in public policy). The
mass media also can stimulate interpersonal discussion and information seeking
behavior.

Therefore, these authors see mass media strategies as one component of broader
programs designed to influence change. However, they point out that the use of
the media is vital to introduce a new program, quickly raise awareness, knowledge,
and interest among the population; coalesce organizational interest to expand
community-based involvement, influence public attitudes and maintain public and
leadership support, and reinforce interpersonal and community-based behavior
change strategies.

Planning a Campaign

A number of conclusions have. been drawn about what makes a motivational
campaign effective. These conclusions address issues of theoretical foundations
for programs, planning and evaluation considerations, program context and
program duration.

Programs that utilize the principles of behavior change are likely to be more
effective, as are those that set realistic goals based on what a campaign can be
expected to accomplish. A social marketing influence is present in these more
successful campaigns, which focus on carefully selected target audiences and use
market research in planning. In addition, these programs use other formative
evaluation methods including materials pretesting with target audiences. Tracking

and other evaluation methods also are used to monitor progress and demonstrate
results.

One aspect of successful planning is the inclusion of key "power figures” and

groups. Advantages to this approach include access to a broader resource base, a
broader base of program support, and continued support. Including key leaders

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and groups also is essential to assure consistency on the same topic; to address
social, community, and institutional factors that interrelate to the success or failure
of the campaign; and to access the expertise of professionals from many
disciplines. Establishing linkages with community-based organizations, the health
care delivery system, and governmental agencies also is an important contributor
to success.

Timing is another key campaign planning factor, including timing program release
to avoid conflicts with similar or competing events. These authors recommend
planning for the long term, with intermediate objectives that contribute to an
ultimate behavior change goal. They also note that it is not realistic to expect
changes as a result of brief interventions. .

Designating Target Audiences

The era of designing campaigns for the general public is long past. Segmenting
broader populations into narrower groups (target audiences) and basing program
design on knowledge of these groups is now the norm. Target audiences most
often are the individuals among whom the behavioral change is sought, but those
who can influence the primary target group(s) also should be considered as targets.
These "influence agents” might include parents, friends, employers, or physicians.
Segmentation into groups solely by demographics is not considered to be as
effective as also considering psychosocial variables. For organ donation, for
example, people who are more materialistic appear to be more likely to consider
their organs as central to their self image (3). Target audiences are prioritized
according to their potential for affecting the issue, accessibility, likelihood of
change, and ability to influence others.

Campaign objectives and strategies may vary for each group targeted.
Communications routes may also differ, depending upon the lifestyles and habits of
each targeted group.

Developing Motivational Messages

A number of integral factors contribute to the effectiveness of a message,
including credibility, appeal, personal relevance, and intent. Messages that are
based on the target group’s knowledge, attitudes, values, and behavior, that are
tested, and that offer a direct benefit, are more likely to be effective.

Style and production quality are important for attracting attention to a message.
Celebrities also can be helpful in attracting attention, but these authors caution
that celebrities also may not be perceived as credible or relevant to the target
group’s personal experience, thereby detracting from message effectiveness.

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Target audience perceptions about the. credibility of a spokesperson or message
sponsor affects message acceptance. People tend to trust sources similar to
themselves, one reason why testimonials by individuals from the target group often
are compelling. . SO

In addition to testimonials, these authors review other kinds of message appeals.
Rational appeals are most effective when used to respond to an acknowledged
need, and with more sophisticated audiences. Emotional appeals are often more
motivational, especially for individuals who have not acknowledged a need.
Threats of harm (moderate fear appeals) can motivate; strong fear appeals can
produce rejection of the message. Fear works best when the message includes a
simple action that can alleviate the anxiety, when the target audience does not
perceive themselves as vulnerable, and when the source of the message is very
credible. However, the appropriate use of fear remains controversial and these
authors generally caution against its use. ,

Rather, they urge the use of more positive appeals such as the rewards of taking
an action as opposed to the consequences of not doing so. Emphasizing
immediate, personal rewards and benefits is seen as more relevant to most people
than more distant, intangible effects. For organ donation, some studies have
suggested that patients may be more likely to donate when appeals are based on
benefits to them, rather than to others (3). These authors also recommend the use
of incentives that build on the existing motives, needs, and values of the target
group.

There are two important criteria for messages to motivate: the message must be
effective -- that is, be clear, comprehensible, appealing, relevant, and motivational
to the target audience. And the target group must be exposed to the message.

Promoting the Campaign

Repeated exposure to a message generally increases its effects with the targeted
population. Exposure to a concentrated cluster of message repetitions appears to
work better than dispersion over a longer period of time.

Different mass media (television, radio, newspapers, magazines) attract different
audiences, with television attracting the broadest audience and radio tending to
attract more specific kinds of listeners. The choice of media format (print or
broadcast) and outlets should match the message purpose and the media habits of
the target population. Different people have different media habits (such as
preferences for television over radio, or prime time over afternoon viewing). Public
service announcements (PSAs) alone generally are not effective in bringing about
behavior change; they must be combined with other approaches. The authors
recommend using multiple media outlets, in combination with promotion through

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community, smail group, and individual activities. The authors also recommend
considering selected purchase of media time and space, developing an
understanding of, and personal, ongoing relationships with the media. Localizing
the issue to relate to the needs of the community also is viewed as important.

Other Findings

Many of the campaigns reviewed by these authors were federally-sponsored.
Others were sponsored by national nonprofit organizations, and still others were
community-based. Several authors offered additional observations about Federal
campaigns.

Many Federal programs with limited resources have chosen a highly visible,
agenda-setting, nationwide, ongoing mass media program as the most appropriate
contribution to an issue. This can be an effective strategy when the mass media
campaign is backed by collaboration with other organizations better positioned to
offer leadership and services within the community. An example of this approach
is included as a case study in this paper (Office on Smoking and Health).

in other cases, Federal agencies have positioned a mass media campaign as a
"quick fix" to a public health problem or response to an issue. Characteristics of
these programs include insufficient planning; political pressure (to respond quickly,
use. specified messages, and/or to use a political figure in the campaign); unrealistic
expectations (for example, behavior change) of mass media programs by leadership
or policy makers; inadequate resources and short term commitments. These are
characteristics that contribute to failure. ,

Other shortcomings of public service campaigns observed by these authors include
a smal! number of PSAs, of uneven quality, and scattered exposure. They note
that PSA campaigns can be effective given certain conditions, including effective
messages, widespread usage, high saturation, and endurance.

Findings from Community-Based Research

In addition to the findings from analytic studies, it is important to note the
comparable findings from landmark community-based research. The Stanford
Three Communities study, conducted in the 1970s, demonstrated that the use of
the mass media could positively affect the health of a community, and that a
combination of mass media, interpersonal contact and social support is even more
effective. In one community, where only mass media was used to communicate
how to reduce personal risks of cardiovascular disease, a 17 percent reduction in
the targeted risk factors (smoking, blood cholesterol, blood pressure, and weight)
was noted. In a second community a more intensive intervention was undertaken,

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adding personal instruction about risk factor reduction and strategies to increase
social support to.mass media messages. In this community, a 30 percent reduction
in cardiovascular risk. factors was found in one subpopulation. Ina third ©
community where there was no program, measures of risk factors found a 6
percent increase (19). . -

Follow up community-based research and demonstration field trials have been
sponsored by the National Heart, Lung, and Blood Institute for the past 10 years
(the Stanford Five City Study, the Minnesota Heart Health Program, and the
Pawtucket Heart Health Program). These programs blend principles from health
promotion, psychology, community theory, and social marketing, and all are
designed as behavior change models. Some of the multiple strategies used by
these community programs that have broad applicability include the involvement of
community leaders and organizations; use of incentives and environmental change
strategies; health professional education use of programs easily adaptable to fit the —
interests and needs of a specific target group; the use of volunteers for community
acceptance and cost effectiveness; and media partnerships with media outlets,
business, and the medical/insurance community. (20).

CASE STUDIES: APPLICATION OF LESSONS LEARNED

To illustrate how the theories, models, and applied research findings summarized
here have been incorporated into national programs, six case studies are described:

@ = The National High Blood Pressure Education Program -- which serves as 4
model for many other health behavior change programs.

@ The National Eye Health Education Program -- a new program that is
applying lessons learned from the high blood pressure model.
e :
@ The Office on Smoking and Health mass media program -- an example of
effective use of limited educational resources.

@ = The National Highway Traffic Safety Administration (NHTSA) passenger
safety programs -- a model that includes information, education, legislation,
and enforcement strategies.

@ The Healthy Mothers, Healthy Babies and Healthy Older People Coalitions --
two health promotion programs that chose coalition building as the primary
focus.

e@ The National Blood Donor Experience -- a review of parallel issues with
relevant lessons about what motivates donors.

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A Long-Term Multifaceted Approach -- The National —
_ High Blood Pressure Education Program .

By 1972, results had accumulated from several clinical studies showing that
reducing high blood pressure reduced the risk of cardiovascular disease. Congress
passed the National Heart, Blood Vessel, Lung and Blood Act, which called for
(among other things) providing risk reduction information for the public and health
professionals (21).

As one result, the National High Blood Pressure Education Program (NHBPEP) was
established as a cooperative program between the National Heart, Lung, and Blood
institute (NHLBI), one of the National Institutes of Health, and other. national
health-related organizations. A coordinating committee now consisting of
representatives of more than 35 national voluntary, professional, and public health
agencies was established. Nearly 20 years later, the program continues to follow a
program development process based on consensus-building. The program includes
three interrelated components -- a health care provider program, a mass media
program, and community-based activity models.

For the mass media program, the target audiences and messages change as
changes in knowledge, attitudes, and behavior occur. Messages and motivational
strategies are based on communication research and extensive pretesting. Public
service announcements and media programming are developed for community
"tagging" (identification) and ongoing news media relations promote coverage to
keep high blood pressure visible to the public (22). About $900,000 is budgeted
for the mass media components of all NHLBI programs each year, with NHLBI staff
support of two professionals (23). |

Almost 20 years after this program started, nearly everyone knows that high blood
pressure increases the risk of heart disease (91 percent) and that it cannot be
cured, but can be controlled by staying on treatment (92 percent). More
important, the age-adjusted stroke mortality rate has declined by more than 52
percent since 1972 (22).

Replication of NHBPEP -- The National Eye Health Education Program

The National Eye Health Education Program is an example of how the NHBPEP
model is being applied to another health issue. The National Eye Institute is
another of the National Institutes of Health. In fiscal year 1988 new language in
the National Eye Institute’s (NE!) appropriation from Congress called for a large-
scale national public and health professional education program, and designated
approximately $1.5 million per year for this purpose (24).

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In 1989, the Institute sponsored a national planning conference bringing together
representatives from 35 public and private sector organizations to set priorities for
information and education related to two designated eye health issues: diabetic
eye disease and glaucoma. Conference participants recommended target
audiences needs and priorities, as well as information and education strategies to
meet these needs. These groups have since agreed to become part of the National
Eye Health Education Program (NEHEP)}) Partnership to establish an ongoing,
interactive relationship between the NEI and other organizations concerned with
eye health (25). .

The NEI coordinates the Partnership program, and facilitates communications
between the Partnership members, develops and distributes mass media and other
materials; and identifies program strategies and policies. The Program "belongs” to
the NEHEP Partnership -- health professional associations, voluntary, health, civic,
and other public sector organizations. These organizations provide endorsement,
resources, and linkages to community-level health care providers and organizations
to promote eye health messages. Drug companies, equipment manufacturers, and
other corporations also are being invited to participate.

An advisory committee representing the Partnership members reviews all draft
messages for accuracy and appropriateness, and a formal health communications
model (26) is followed to plan, test, implement, and evaluate the program.

In early 1991, the NEHEP again sponsored a national conference to share the
results of target audience research, to introduce plans for the release of results of a
national public knowledge, attitudes, and behavior baseline survey cosponsored by
one Partner (Lions Clubs International), and to seek endorsement for prototype
materials for national mass media campaigns and health education programs with
community support. Recommendations of the Partnership members are being
incorporated into the program, and long range strategic planning has begun (24).

Use of the Mass Media -- The Office on Smoking and Health

The Office on Smoking and Health (OSH), Centers for Disease Control, serves as
the focal point for Federal tobacco control activities. One significant function of
the Office is the communication program, mandated by 1984 legislation. A staff
of four is responsible for press relations, mass media campaign development,
development of other educational materials, marketing and distribution, and public

inquiry response; in addition, an advertising agency contract averages about
$700,000 per year (27).

A number of organizations have a long history and an established role in tobacco
control. Therefore, the challenge to OSH_.was to carve out an appropriate,
effective, and affordable communication function. Because no national agency

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was committed to maintaining.a relationship with the mass media on this topic,
OSH chose this function.

Plans for new campaigns are reviewed by representatives of national agencies and
organizations with an interest in tobacco control and State health departments.
The Office frequently co-produces public service announcements (PSAs) and
related materials for distribution by other national organizations or Federal
agencies; materials are offered once a year to State health departments for
distribution with their own credit lines.

OSH has a reputation for creative, high-quality PSAs. Together with a concerted
PSA marketing program (including personal delivery to television stations in large
media markets and follow-up telemarketing), OSH has been able to keep a fair
share of the available PSA time, even with very strong competition from issues
including drug abuse and AIDS (28).

Broadcast Advertisers Reports (BAR), a service that monitors the airing of
commercials on television, estimates that between 1983 and 1987, when OSH
released twelve television PSAs, these spots were shown more than 48,900 times,
about one-third in prime time. This is comparable to an advertising expenditure of
$9 million, or about $1.8 million per year. It is estimated that up to 64 percent of
the total population in these markets was exposed to OSH antismoking PSAs in
any month of a given year (28).

However, BAR reports also show that the amount of public service time available
from stations is decreasing. OSH is turning to alternative strategies including
reaching youth through classrooms, coaches, and gym boards (locker room
advertising); placement in specialty. magazines; and regional and community-level
strategies including media advocacy. (Because of tobacco advertising in
newspapers and magazines, opportunities for the promotion of antismoking
messages through the print media are extremely limited.)

The Office selects three target audiences for the three waves of media materials
released each year -- for example, youth (to prevent uptake of smoking), pregnant
women and new parents (to encourage smoking cessation), and middle-aged
smokers (also to encourage cessation). Within each of these broad demographic
categories, more specific groups are targeted; for example, campaigns produced
this year will focus on African Americans (29). New strategies will address
building support for tobacco control within African American communities.

OSH routinely commissions market research to identify changes in tobacco-related
habits, specific: motivational appeals, and changes in media habits of the target
audiences. Appeals and selection of media outlets are tailored to fit each target
audience. All educational materials are pretested with target audiences. Market

21
research findings are summarized as principles to guide the development of
messages and materials. For example, OSH follows these principles to target
youth:

e the use of celebrities to appeal to teens is troublesome because of the risk
of inappropriate behaviors on the part of the celebrities, and the very rapid
shifts in celebrity popularity among teens; spokespersons who are perceived

as “like me" are the most acceptable to adolescents.

e teens say that they want to be “scared,” but message pretesting has
demonstrated that they are more likely to respond to positive ‘appeals.

@ peer acceptance and peer approval are strong motivators.

e lighthearted appeals, animation, and humor must not appear juvenile or the
messages will be rejected.

@ appeals to adolescents vary according to the specific group targeted (e.g.,
as segmented by age. interest, ethnicity, gender, or “clique”).

e@ teenagers can be very critical of appeals and production values they consider
out-of-style -- often by the time mainstream America accepts a teenage fad
or style, it is considered outmoded by its originators.

e production values must "stand up" to the strict and constantly shifting
standards of teenagers who are accustomed to MTV.

@ anti-smoking appeals must compete in the marketplace with tobacco
advertising supported by millions of dollars in market research and purchased
space. (27)

OSH has found that television stations are very eager to receive PSAs appropriate
for children and teens which they can use in the non-prime time slots (e.g,
afternoons and Saturday morning) when a large proportion of the viewing audience
falls within this age range.

The Office on Smoking and Health, given limited resources to communicate and a
national mandate, chose to concentrate primarily on the use of mass media.
Because other health agencies and voluntary organizations have community-level —
outreach capabilities, OSH materials are often integrated into broader, local
programs. OSH considers this strategy to be cost effective, but foresees a need to
move away from a reliance on dwindling public service time in the future.

22
Coalition Building -- Healthy Mothers, Healthy Babies, —
and Healthy Older People .

Summarized here are two Public Health Service programs that emphasize coalition
puilding as a primary strategy to educate the public about health. These programs
ofier a different model for program development from the NHBPEP model, based
on the same behavior change and communication principles. .

Participants at the Surgeon General’s Workshop on Maternal and Infant Health held
in December 1980 identified a need to form strong linkages between individuals
and groups concerned about maternal and infant health in order to increase public
awareness and support for policies and programs. A small planning group
representing the Public Health Service and several national voluntary and health
professional organizations met to outline strategies for establishing a coalition for
this purpose. A planning conference was held to identify needs, coalition
functions, and priorities; as a result of the conference, 35 national organizations --
governmental, voluntary, and health professional -- agreed to work together and
the Healthy Mothers, Healthy Babies Coalition was begun (30).

From the beginning, it was apparent that there would be scant financial support for
this effort; one strong motivation for coalescing was a need to increase support for
maternal and infant policies, funding, and programs. Therefore, the functions of
the Coalition (which, 10 years later, counts more than 90 national organizations as
members) are to share information, identify issues that can be addressed by all or
clusters of member organizations, and provide a network to facilitate organizational
sharing and collaboration. Many of the national organizations involved have
community or State-based chapters, and an early Coalition initiative fostered the
formation of independent but related State-level coalitions. Almost all States now
have such coalitions; each with a different structure and function.

The national coalition is informal; it was not incorporated until 1989. It was
managed by the Public Health Service for the first 5 years, with an annual budget
of $75,000 supplemented by staff and funding support from several PHS agencies
(identifying that participation would benefit their own programs). Since the mid-
1980s the coalition has been maintained by a staff of two, housed within the
American College of Obstetricians and Gynecologists and supported by a small
Health Resources and Services Administration (HRSA) grant (through HRSA’s
Bureau of Maternal and Child Health) averaging about $130,000 a year (31). No
media activities are developed by the Coalition; instead, the materials and

programs of its members are promoted (32).

The Healthy Older People program was sponsored from 1985 through 1989 by

the Office for Disease Prevention and Health Promotion to encourage health
promotion among older adults (33). During a 3-1/2 year campaign, approximately

23
$1 million and two professional staff (part-time) were assigned to this program. A
primary focus was the establishment of State-level coalitions to link the health and
aging networks that have traditionally been funded and operated separately. Of
the more than 40 States that participated in the health promotion program, which
included both mass media and community activities, 35 developed Healthy Older
People Coalitions. Each developed their own activities; some have continued past
the end of the national campaign.

Lessons have been learned about coalition building from these efforts, including the
importance of investing in the development of the coalition structure, and in
coalition support. Support may include the development of mass media and other
educational materials, or other activities that offer an incentive for widespread
involvement. :

Each of these coalitions was founded in cooperative priority-setting and ‘planning,
with the Public Health Service offering support and initial leadership. Also
important were the establishment of minimum standards and guidelines, early
agreement that credit and ownership would be shared, and agreement regarding
the role of private sector support. .

important benefits have resulted from the investment in coalition building, including
ongoing linkages between organizations, broad “ownership” of and sponsorship for
programs, and leveraged resources, including broad use of volunteers to support
program activities. Most significantly, these coalitions have provided a level of
attention to and involvement in their issues, over a longer period of time, than
could have resulted from Federal sponsorship alone.

The Role of Legislation -- Safety Belt and
Child Restraint Programs

Fewer than 12 percent of drivers, and approximately 20 percent of children under
age 5 were using safety restraints in motor vehicles in 1982 (34). The National
Highway Traffic Safety Administration, U.S. Department of Transportation (DOT),
estimated that approximately half of all highway fatalities could be prevented if all
passengers were properly restrained, and called for a combination of public
information, education, incentive, and use requirement programs to be
implemented by a network of organizations to significantly increase the number of
restraint users. Criteria for these efforts included specific audience targeting;
comprehensive programs designed to reach large numbers of people; conducted
over a substantial period of time (34).

Reasons and excuses given by the public for not wearing belts include

inconvenience, discomfort, laziness, fear of entrapment, and forgetfulness.
Factors believed to underlie these reasons include a perceived lack of vulnerability,

24
lack of understanding of the efficacy of use, misinformation, lack of established
habit, and negative attitudes toward use (34). :

In 1984, DOT recommended the passage of State laws mandating the use of
restraints as the most cost effective measure. At the same time, DOT recognized
that neither legislation nor increased usage would likely occur without public
information, education, and incentive programs; the greatest attitudinal obstacle to
legislation was identified as “intrusion into the family." Since 1985, all 50 States
and the District of Columbia have enacted laws requiring that young children ride in
safety seats or belts. The combined effects of these laws, law enforcement, and
public eduction has resulted in a child safety seat use rate of 84 percent (1990)
(35). .

By 1990, overall safety belt use had risen to 49 percent. Safety belt use in cities
with belt use laws was 52 percent; in cities without laws, 36 percent. The safety
belt usage rates in States with laws in effect ranges from 33 to 80 percent. This
variation reflects factors such as differences in public attitudes, enforcement
practices, legal provisions (penalties), and the availability of public
information/education programs (35). The Department has set a national goal to
reach 70 percent safety belt usage by 1992 (35).

To reach this goal, NHTSA has developed a comprehensive program including
media messages, educational and incentive efforts with other organizations,
encouragement of organizational use policies, and research, development, and
evaluation. The types of national-level, organizations involved have included
education, health, medical, civic, safety, and media. NHTSA also works through
State offices of highway safety, providing technical assistance and materials. In
turn, these State offices develop networks within their States (35).

Program components include a public service mass media campaign of long
duration, promotional events such as an annual "Buckle Up America!" week,
collaboration with national organizations, coordination through State highway
departments, and intensive efforts to support organization and activities at the
community level.

At the community level, involvement of law enforcement agencies is strongly
promoted both to enforce laws, and to conduct educational activities. Involvement
of a wide range of others within the community is encouraged, including school
administrators and teachers, physicians, judges, legislators and other public
officials, parents, employers, media, tavern and restaurant owners, pharmacists,
and attorneys.. Many communities develop committees or task forces representing
these sectors. Recommended strategies for community-based programs include
using a mix of public information and mass media, education and incentive
programs, with requirement policies or law enforcement. Principles underlying

25
community efforts include identifying, integrating, and coordinating the roles and
resources of all community sectors. Public information, education, enforcement,
and prosecution should be interdependent parts of an operating community system
addressing the issue; establishing programs that are comprehensive, coordinated,
and sustained are necessary to assure a lasting effect. Social norms must change
to ensure long-range success. Such change can be accomplished through a
comprehensive community-wide approach over a long period of time (36).

The NHTSA program demonstrates the value of including policy change strategies
in programs that ultimately aim for behavior change by individuals. This program
also shows that no one strategy, including laws that mandate behavior, can
guarantee that change will occur.

Understanding the Public -- Blood Donors and Their Motivations

The National Research Council (NRC) recently completed a review of the U.S.
blood supply, as one part of a larger study to look at the effects of HIV/AIDS on
our society (37). Summarized here are findings from that report, related to who
donates blood, motivation and barriers to donation, and special efforts to recruit
minority donors. This case study is presented to demonstrate the value of
identifying and conducting research to understand potential donors. Although
there are obvious differences between blood and organ donation, some of the
donor motivations and barriers identified here could be investigated for relevance to
organ donation.

There are two separate blood collection systems in the United States. A
commercial system pays donors for plasma, and a voluntary system collects whole
blood. An all-volunteer system for whole blood collection has been nearly universal
in this country since 1975 "...to prevent the intrusion of undesirable factors (e.g.,
financial remuneration) into motivations to donate blood” (37). The American Red
Cross collects about half of the whole blood; the American Association of Blood
Banks, members of the Council of Community Blood Centers, and independent
hospital blood banks account for the rest. About 80 percent of blood is collected
at mobile sites. Blood drive recruitment is through high schools and colleges, and
worksites (including businesses, local government offices, and public sector
organizations) (37).

It is estimated that about half of the adult, population should be eligible to give
blood (37). According to a 1984 survey, about 8 percent of men and 5 percent of
women reported that they had given blood in the past 12 months (38). Most
blood comes from repeat donors. Women predominate among first time givers;
men are far more likely to be repeat donors. Less than one-third of those who

26
have given a gallon or more are women. It is possible that the fewer numbers of
women donors in the repeat donor category may be related to physical condition
(e.g., low hemoglobin levels) rather than a lack of motivation (37).

Most donors are between 20 and 40 years old; adults in their 60s account for only
2-3 percent of all who donate (37). Apparently whites (41 percent of whom said
that they have donated at least once) are more likely to donate than are blacks (32
percent) based on self-reported information (38). In response to one recent
survey, 4 percent of blacks in comparison with 7 percent of whites said that they
had donated within the last 12 months (38).

Frequent donors tend to have higher incomes than nondonors, and higher
educational levels than occasional or nondonors. | Blue collar and clerical workers
are less likely to donate than those with managerial, professional, and technical job
titles.

Reasons given for donating include altruism (e.g., emotional satisfaction, heroic
feelings, heightened self-esteem); social pressure (e.g., worksite drive, personal or
telephone request); a need within their community (strongest when there is
community support for donation); personal experience with a need for transfused
blood (friend or family member); getting a "medical exam," and blood typing or
cholesterol testing (sometimes offered) (37). .

The motivational force of altruism is not clear, but altruism alone may not be
sufficient to motivate individuals to donate. Research (37) suggests that additional
incentives (e.g., competition, discount coupons, raffles) result in greater donation
rates. However, one researcher concluded that "only some people report donating
for a reward, such as money, or time off from work; for most donors, reward does
not appear to be a major motivational factor” (39).

Interestingly, one study found that respondents did not consider mass media
appeals as "having been asked" to donate (40). Additional research would be
needed to identify to what extent combining mass media and personal interaction
strengthens motivational appeals.

Factors that appear to inhibit blood donation include medical ineligibility (actual,
perceived, or rationalized); fear (e.g., of pain, needles); physical reactions from
previous donation experience; apathy; and inconvenience (time, delays,
inconvenient collection hours or location, lack of privacy) (37). Similarly, apathy
(3) and fear also appear to be barriers for organ donation (4).

One study (41) reviewed in the NRC report describes a four-stage process to

increase the number of blood donors. First, identifying negative attitudes among
potential donors and developing messages to shift or neutralize those attitudes.

27
Second, developing motivational appeals based on internalized motives, focussing
on "self concepts” of potential donors. Then, working to achieve behavioral
intentions to donate as a next stage towards behavior change related to donation.
Finally, encouraging donation as a habit, to reinforce and reward donation
behavior. oo

Recommendations are included in the NRC report for increasing the number of
blood donors. These recommendations. are based upon research findings of
barriers and incentives to donate and reflect the principles of effective program
design (as summarized earlier in this paper). Recommendations for increasing the
number of black blood donors, for example, include using community-based social
networks, appropriate role models, and convenient donation locations. More
specifically, this report recommends :

® recruiting at worksites employing large numbers of minorities; use of
minority volunteers.

® = recruiting on college campuses through a black fraternity and/or a black
caucus.

-@ = making donation relevant to blacks (e.g., point out blood needs among the
, African American population).

e tying in with Black History Month or other pertinent events.
e offering sickle-cell screening at the donation site.

@ = involving African American community leaders in planning and as
spokespersons (37).

Although there are salient differences between blood and organ donation, some of
the motivations, and barriers to motivation, may be similar. A more thorough
review of motivational studies related to blood donation would identify strategies
that could be tested for application to increasing the number of organ donors.

Application of Lessons Learned

These model practices add to the lessons learned for application to organ donation
programs:

1. In addition to broad program goals, focusing on achievable intermediate
objectives such as public knowledge or community capacity-building, helps
direct program activities. Including evaluation measures to track progress
permits revision of program strategies as objectives are met.

28
More successful programs commit significant resources to program. planning
and development and plan campaigns of extended duration; many have long
range strategic plans. |

A prerequisite to developing a successful program is market research to help
identify target audiences. Additional market research with those audiences
is needed to explore barriers and incentives to behavior change (organ
donation). Motivational strategies and messages are built upon these
perceptions of the target audience.

Formative evaluation (message and materials testing) is essential to
producing messages and motivational strategies that will work. |

Stronger programs result from working with other organizations or systems
that can contribute complementary strengths (such as ties to and credibility
with target audiences); coordination begins at the earliest program
development stages. "

Despite heavy competition for a finite amount of television public service
time, it is possible to access sufficient time to reach significant numbers of

- viewers. To be effective, programs must produce high quality PSAs, market

them to stations, localize (through local tagging and hand delivery) where
possible, and target PSAs to audiences that can be reached when public

-service time is available. Many programs combine PSAs with other

strategies (e.g., news relations) to increase message exposure through the
mass media.

Legislation to mandate a behavior may be one useful strategy, in context
with programs to build and maintain public support, educate and provide
skills to target audiences. Legislation alone, without supportive strategies,
such as incentives, penalties, and enforcement, is not likely to change
behavior.

Coalition building can contribute to establishing a broad base of program

‘support (at national, State, and community levels), leverage limited

resources, assure consistent messages and strategies, and help assure
attention to an issue over time.

Comprehensive, multifaceted, long-term programs, addressing individual
change and those factors that support or block that change (including health
care provider behavior) are more likely to produce significant changes in
behavior.

29
SUMMARY OF RECOMMENDATIONS: THE DESIGN OF A CAMPAIGN TO
INCREASE THE NUMBER OF ORGAN DONORS

Based on studies reported in the literature and the experiences of other public
health and safety programs, it appears that information and education programs
can contribute to increasing the number of organ donors given sufficient resources,
longer term commitment, and adequate campaign planning and development.

Such a program should engage the mass media, community, and interpersonal
communications (especially within the family). A communications program should
be positioned within a broader program that addresses other essential components —
of change such as health care provider behavior, social norms, supportive policies,
and systems that block or support behavior change.

Recommendations for developing such a program include:
1. Strategic Planning:

Planning for an organ donor campaign should begin with a longer term commitment
and strategic decision making that includes:

@ measurable objectives representing intermediate progress towards program
goals.

® multiple strategies based on behavior change and other relevant models and
theories, lessons learned from previous organ donor, blood donor, and other
health and safety campaigns.

2. Role of the Mass Media:

Use of the mass media can be one way to effectively support increased organ
donation:

@ mass media strategies can increase and maintain individual and societal
support for organ donation and can promote other program components.

@ mass media campaigns should focus on media outlets matching the habits of
target audiences, and be integrated with community outreach and health
systems support.

® the use of public service announcements should be considered as part of a
mix of mass media strategies.

30
competition for media time and space, target audience attention, changes
occurring both within the media industry and in the media habits of the
public should be considered when making decisions about the most
appropriate uses of the mass media.

3. Target audiences:

Decisions about which specific population groups will be targeted are a prerequisite
to the development of effective motivational strategies: _

once defined, market research should be conducted with them to build upon
what is more generally known about barriers and incentives to organ
donation, and to research motivational appeals with the most potential for
promoting change.

in addition to current knowledge, attitudes, and behavior, other contextual
issues must be considered in designing motivational appeals for specific
audiences, including family and cultural traditions, socioeconomic factors
that affect an individual's willingness and capability to accept change,
community customs and social norms, religious a and political influences, and
perceptions of the health care system.

4. Message and Strategy Development:

The practice of social marketing, as applied by other health programs, will help
guide effective message and strategy development:

developing motivational messages and strategies should be based on the
findings of market research conducted with target audiences.

developing strategies to increase social support for organ donation and
health care provider behavior are needed in addition to strategies to motivate
individual and family change.

communications strategies should be interwoven with strategies to address
institutional, policy, and other barriers to donation.

pilot studies or other tests of new programs can help identify needs for
refinement before more extensive resources are committed.

5. Program Promotion and Marketing:

In order to produce change, programs must be carefully developed and tested, but
effective promotion and marketing of those strategies are equally necessary:

31
marketing strategies should be planned to assure adequate target audience
exposure to messages through the mass media and through community .
programs.

adequate message exposure is a prerequisite to having an effect; both
repeated exposures and exposure over time are needed.

6. Evaluation:

While the most critical measure of success is an increase in the number of donated
organs, intermediate measures are needed to track progress and make any program

adjustments needed to reach that goal:

formative (message and materials pretests) evaluation should be an integral
component of program development.

process measures are both affordable and necessary.

Some outcome measures (such as tracking changes in target audience
knowledge, attitudes, behavioral intentions, and behaviors) also are needed.

evaluation measures are most useful if the results are used to refine program
strategies.

7. Coalition Building:

To help assure optimal program success, collaboration and coordination at the
national and community levels should be given serious consideration:

consider including health professional associations, health service
organizations, government agencies, national organizations with a
community focus (social, fraternal, civic, and religious) that have credibility,
access, and influence with potential donors.

involve relevant organizations in the planning process and focus on
establishing and nurturing linkages at national, State, and local levels.

include mechanisms to facilitate information sharing between participating
organizations to help maintain networks.

consider appropriate roles for the for-profit sector (such as major employers,
medical services, drug and equipment manufacturers).

32
8. Legislative Initiatives:

Legislation can contribute 7 several! ways, including:

giving a mandate and resources to the Federal government to develop
programs to motivate and support increased donation.

mandating certain behaviors, which can be useful as one of many change
strategies, given related educational, incentive, and enforcement efforts.

9. Localization:

Both national leadership and community involvement are needed:

(1)
(2)

(3)

(4)
(5)

(6)

nationally developed programs can be cost effective, but should be flexible
to permit local tailoring to fit specific audience needs, as well as the
religious, cultural, and other traditions and ethnic patterns of the community.

policy makers, health care providers, and others who can facilitate or hinder
the donation process can be the target of both national and locai efforts.

changing social norms in support of organ donation will require community

involvement.

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