Benefits and Challenges of Generating Community Participation

Benefits and Challenges of Generating Community Participation
Leonard A. Jason
DePaul University
This article conveys important and useful information that
practitioners can apply in their day-to-day
professional lives by including citizen– consumer– client
participation in their work. Three collaborative
action projects are described that yielded significant benefits
both for local communities and broader
policy. These interventions, which were on topics as diverse as
tobacco use among youth, recidivism
among substance abusers, and chronic fatigue syndrome, were
greatly enhanced by the involvement of
citizens. The case studies are presented in such a way that the
reader has a sense of how, when, and in
what ways the interventions were collaborative as well as what
the outcomes have been vis-à-vis public
policy. The article is intended to encourage professional
psychologists to collaborate more fully with
community groups in efforts to expand and improve behavioral
health services and policies.
Keywords: citizen participation, public policy, collaboration,
community psychology
You might ask why practitioners would be interested in activity
involving community members in their work. With busy
practices,
multiple obligations, and an increasingl y hectic work world,
add-

ing another set of responsibilities might seem to be burdensome
and even counterproductive. Yet, it is very possible that our
work
could be immeasurably enriched by obtaining greater
involvement
from citizens– consumers– clients. In fact, such work might
even
make for more relevant assessments and interventions as well as
better relationships and cooperation with community partners
and
local organizations. These types of rich collaborative efforts
could
even help bring added attention, publicity, and even public
policy
benefits. In fact, whether you are implementing individual -level
interventions at the local level or larger-scale public health
projects
at the community or state level, you probably are going to be
involved in making some decisions regarding behavioral health
policies.
In this article, some of the benefits and challenges of
mobilizing
citizen participation will be reviewed. Clearly, these
collaborations
have important implications for practitioners. For example, it is
possible that bringing community members into our work might
help us better prioritize the needs and interests of our clients
and
participants (Chataway, 2001). In addition, a relationship based
on
meaningful citizen involvement may be a critical factor for the
sustainability of community efforts (Altman, 1995). In a sense,
there are multiple worthy rationales for citizen participation, in-
cluding its potential in sensitizing, prioritizing, and sustaining

intervention and research efforts, and these collaborative efforts
might also ultimately help us even influence public policy. But
before dealing with these very practical matters, let me first de -
scribe some basic terms that involve the collaborative process.
Kelly (1990) considered the collaborative endeavor a discovery
process as we work together to define the intervention and
assess-
ment activity. In a sense, whenever a practitioner works as a
therapist, consults with an organization, or develops a
community
intervention, there is always an effort to get to know the needs
of
the clients, customers, or community group. And yet, the types
of
interventions we select and even the way we approach analyzing
a
particular social or individual problem might be enriched with
the
involvement of community members. In other words, even
before
we launch some of our interventions or change efforts, we might
profit from involving community members, and this decision to
include or not include clients’ and citizens’ input can be
compli-
cated (Wandersman, Chavis, & Stucky, 1983). Some of the
char-
acteristics of our collaborators, such as motivation to
participate,
available resources, and level of training might also influence
the
level of involvement. There might also be very different levels
of
involvement, ranging from requesting community members to
sit
on advisory committees to even inviting them to be in decision-

making roles. They might also be involved in different phases
of
the intervention or research activity, from problem definition,
program development, communication, and utilization of the
find-
LEONARD A. JASON received his PhD in clinical psychology
from the
University of Rochester and is a professor of psychology at
DePaul
University and the director of the Center for Community
Research. Jason
is a former president of the Division of Community Psychology
of the
American Psychological Association (APA) and received the
1997 Distin-
guished Contributions to Theory and Research Award from the
Society for
Community Research and Action (Division 27 of the APA).
THIS RESEARCH WAS SUPPORTED BY grants from the
Robert Wood Johnson
Foundation’s Substance Abuse Policy Research Program and the
National
Institutes of Health (National Cancer Institute Grant CA80288,
National
Institute of Allergy and Infectious Diseases Grant AI36295,
National
Institute on Alcohol Abuse and Alcoholism Grant AA12218, and
National
Institute on Drug Abuse Grant DA13231). I thank my
community collab-
orators, Paul Molloy, Bruce Talbot, and Carole Howard, who
were inspi-
rational sources of support and guidance. I thank my many
colleagues who
have shaped the ideas in this article, including Joseph Ferrari,

Bradley
Olson, Margaret Davis, Josefina Alvarez, John Majer, Steven
Pokorny,
Judith Richman, Peter Ji, Monica Adams, Renee Taylor, and
Susan Torres-
Harding. I also thank Tara Latta, Michelle Davidson, Jillian
Lee, and
Cassandra Nelson for helping editing this article.
CORRESPONDENCE CONCERNING THIS ARTICLE should
be addressed to Leo-
nard A. Jason, Center for Community Research, DePaul
University, 990
West Fullerton Avenue, Chicago, IL 60614. E-mail:
[email protected]
Professional Psychology: Research and Practice Copyright 2006
by the American Psychological Association
2006, Vol. 37, No. 2, 132–139 0735-7028/06/$12.00 DOI:
10.1037/0735-7028.37.2.132
132
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ings. Because of differing amounts of experience and resources,

some citizens are better able to participate at a higher level than
are
others.
The following three case studies explored how participatory
methods can strengthen how we work and examined the benefits
that occurred both for local communities and at a broader public
policy level (Jason, Keys, et al., 2003). The issues that are
covered,
helping children quit smoking, reducing relapse among
substance
abusers, and helping better understand the extent of a
complicated
health illness, illustrate some of the myriad concerns that are
relevant to practitioners. Each of these projects was enhanced
by
obtaining greater involvement by citizens– consumers– clients,
and
in the next sections, the challenges to practitioners of citizen
participation will be explored.
Youth Access to Tobacco
In the United States, over 400,000 people die from smoking-
related illnesses each year, making smoking the leading
prevent-
able cause of death. Every 24 hr, nearly 3,000 more youth
become
addicted to nicotine. Tragically, one third of these youth will
later
die of tobacco-related diseases. Psychologists have often
attempted
to deal with this serious problem by developing and
implementing
school-based preventive interventions. I had been involved in
such

efforts in the late 1970s when I developed and implemented
tobacco prevention programs in schools. At that time, students
informed me that store clerks and merchants were openly selling
them cigarettes, and this sent a mixed message to youth that
suggested adult approval of youth smoking. I believed that easy
access to tobacco products reduced the effectiveness of our pre-
vention programs.
In the 1980s, we used the students’ critical input to assess these
illegal commercial sales of tobacco, and we found that 80% of
Chicagoland area stores sold cigarettes to minors. After the
local
Chicago media widely publicized this study’s findings, Officer
Talbot from the suburban town of Woodridge, Illinois,
contacted
me because he was interested in working on this community
problem. Our research group collaborated with Officer Talbot
and
the Woodridge police to pass legislation in which vendors
caught
illegally selling tobacco and minors found in possession of
tobacco
would receive a fine. Officer Talbot and I reasoned that compli -
ance checks (i.e., regularly sending in minors to stores to
purchase
cigarettes and fining those that illegally sold tobacco to minors)
would reduce illegal merchant sales to minors. However,
Officer
Talbot also felt that it would also be important to reduce
minors’
public smoking by fining minors for possession of tobacco.
I knew that the public health community would be strongly
opposed to fining youth for smoking, because they felt that tick-
eting youth for a civil crime would take attention away from the
illegal action committed by store vendors who sold youth the

tobacco. In addition, possession fines were supported by the to-
bacco industry, and the antitobacco community generally
viewed
with suspicion any actions the tobacco industry endorsed. How -
ever, the tobacco industry at that time was exclusively
promoting
the idea that minors should be fined for tobacco possession and
that merchant education programs, and not fines, were all that
was
needed to motivate merchants to stop selling tobacco to minors.
In
contrast, those within the antitobacco coalitions felt that
focusing
on minors was inappropriate, as it was the merchants who were
responsible for providing access of these dangerous substances
to
our youth. These attitudes also influenced me, and I was at first
somewhat skeptical of Officer Talbot’s idea of fining minors for
tobacco possession. Officer Talbot, however, felt that
community
norms needed to be changed with respect to both merchant sales
of
tobacco to minors and public smoking by minors. As a D.A.R.E.
(Drug Abuse Resistance Education) police officer at a junior
high
school, Officer Talbot had felt powerless to stop minors from
publicly smoking at school functions and in the neighborhood,
and
he believed that when youth smoked in public settings, others
might erroneously believe that it was cool to smoke and that the
majority of youth smoked. Officer Talbot believed that issuing
tickets to youth for tobacco possession was a critical part of a
comprehensive antitobacco policy. After hearing these
arguments,
I felt that it was important to evaluate the combined strategy of

focusing on both merchants who sold tobacco and minors who
publicly smoked tobacco.
Two years after implementing the two-pronged program, rates
of merchant cigarette sales to minors decreased from an average
of
70% to less than 5%, and adolescent smoking decreased over
50%
in a Woodridge junior high school (Jason, Ji, Anes, & Birkhead,
1991). Woodridge was the first U.S. city to demonstrate that
cigarette smoking could be effectively decreased through
legisla-
tion and enforcement. Because of his experience on the
Woodridge
project, Officer Talbot became a well-known national authority
on
illegal sales of cigarettes to minors. He began to advise commu-
nities throughout the country on how to establish effective laws,
and he testified at congressional hearings in Washington, DC, in
support of the national laws governing cigarette sales to minors,
known as the Synar Amendment (Center for Substance Abuse
Prevention, 2006), which was ultimately enacted. States are now
bound by federal law to reduce illegal sales of tobacco to
minors.
Officer Talbot was instrumental not only in the passage of this
federal amendment but also in working with grass roots
organiza-
tions throughout the United States in disseminating his
successful
innovation.
Supported by a grant from the Robert Wood Johnson Founda-
tion, a subsequent study aimed to identify whether the decrease
in
underage smoking was solely due to the reductions in illegal
merchants’ tobacco sales or due to the combination of

reductions
in illegal merchant tobacco sales and fines to minors. Findings
from this randomized community study of eight towns supported
the combined intervention of merchant enforcement and tobacco
fines for minor possession (Jason, Pokorny, & Schoeny, 2003).
It
was also found that the majority of youth supported the tobacco
possession bans. We are currently in the process of replicating
this
study with a larger sample of 24 towns with a grant from the
National Institutes of Health (NIH).
One additional aspect of this outcome study involved develop-
ing a scale to assess each community’s readiness to devote re -
sources to and participate in the study. We found that those
communities with higher degrees of readiness were more likely
to
continue the intervention with high fidelity in the absence of
any
continued contact with the researchers (Jason, Pokorny, Kunz,
&
Adams, 2004). At that follow-up time, 73% of the towns were
still
regularly implementing and collecting enforcement data, and the
average rate of merchant compliance among these towns was
95%.
133PARTICIPATORY RESEARCH
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While working collaboratively with citizens, we found that
com-
munities were at different stages of readiness to collaborate on
developing strategies to reduce youth access to tobacco, and as
a
consequence, there was a need to tailor our interventions toward
the unique needs of each community. For some communities, we
needed to focus our efforts on changing laws so that police
could
more easily implement polices (e.g., making the issuing of fines
a
civil rather than a criminal offense), whereas with other
commu-
nities, we were able to set realistic goals for the types of police
resources that could be allocated to our study (e.g., one rather
than
many police officers).
Here are a few lessons that we have learned from this
community-level intervention. Including the perspective of
mem-
bers of the community can uncover aspects of a problem that
would otherwise have been overlooked. For example, in the case
of tobacco, it was the students in the community who brought to
my attention the contradictory messages the youth were
receiving
from tobacco prevention campaigns versus the community mer-
chants who openly sold youth cigarettes at local stores. On the
basis of this information, as well as on the collaboration with

Officer Talbot and the Woodridge police department, an
interven-
tion was developed that effectively reduced rates of illegal
tobacco
sales. Regardless of whether one is working with a client or on
a
larger scale social problem, it is important to closely listen to
what
our consumers are telling us. At times we will need to be
willing
to take on some of the environmental barriers to success, such
as
the case of dealing with merchants who sold cigarettes illegally
to
minors. If we are willing to listen to the suggestions of our
clients,
we might be able to more comprehensively deal with the sources
of the addictions or problems that our clients are confronting.
In addition, when we develop strategies to deal with problems,
practitioners need to be willing to think outside the box and
even
endorse or test our solutions that might seem somewhat
unortho-
dox or even alien. I was able to listen and seriously consider the
recommendations of Officer Talbot, which involved an interven-
tion focusing on fining merchants who sold tobacco to youth
and
fining youth who publicly smoked. By listening to a member of
the
community who was extremely knowledgeable of the problem
facing his community, I was able to overcome my resistance to
implementing a controversial intervention that my colleagues
within the antitobacco movement so fervently opposed. In addi -
tion, an unexpected outcome of this collaborative effort was
that

the police officer who was associated with this change effort
ultimately became a national leader who was able to influence
policy at a federal level.
Finally, all communities were not as ready for a collaborative
intervention as Woodridge. In our randomized study, we found
that communities ready for the intervention, and more invested
and
involved, were more likely to maintain the interventions over
time.
It is likely that communities, like individuals, have different
levels
of readiness to become involved in solving a community
problem,
and tailoring interventions to the unique circumstances of each
community might enhance university– community
collaborations.
This suggests that practitioners will probably need to adapt
their
interventions to the unique needs of each community. Whether
we
are working with individuals or community groups, each has
unique customs, norms, and traditions that need to be
understood
and appreciated. When we tailor our empirically derived
interven-
tions to the needs of our customers, we ultimately will gain both
the appreciation of our clients and better outcomes for our
work.
Oxford House: Recovery Homes
Under modern managed care, private and public sector inpatient
substance abuse facilities have reduced their services
dramatically.

Thus, there is a tremendous need to develop, evaluate, and
expand
low-cost, residential, nonmedical, community-based care
options
for substance abuse patients. Oxford House, founded in 1975 by
Paul Molloy, illustrates a community-based approach toward
sub-
stance abuse abstinence. I learned of this innovation while
watch-
ing a segment on the 60 Minutes CBS TV news program in the
early 1990s. In brief, what I learned was that unlike traditional
hospital care, in which trained professionals are necessary, or
therapeutic communities, in which residents have a maximum
length of stay, Oxford House offers a community where
residents
can live without the involvement of professional treatment,
staff,
or time restrictions on the length of their stay. Because there is
no
maximum stay, residents may have more time to develop a sense
of self-efficacy toward maintaining abstinence. Similar to Alco-
holics Anonymous, members of an Oxford House receive absti -
nence support from peers; however, unlike Alcoholics Anony-
mous, there is no single set course for recovery that all
members
must follow. In fact, each resident of Oxford House is free to
decide for him or herself whether to seek psychological or sub-
stance abuse treatment by professionals or by Narcotics Anony-
mous. These self-governing settings, which are cost efficient
be-
cause the residents obtain jobs in order to pay for their own
housing, food, and other expenses, are particularly promising as
a
recovery model.
I telephoned Molloy after seeing his interview on 60 Minutes,

as
I was most impressed with this model, and I asked him if he
might
like to work with an outside evaluator to better understand what
occurred within the Oxford Houses. Molloy agreed to work with
me, although no specific agenda was discussed. His
organization
later received funding from the state of Illinois to send a repre -
sentative to Chicago in the early 1990s to establish Oxford
Houses
in Illinois. However, because of funding complications, the
repre-
sentative was not provided necessary housing and financial sup-
port. Somewhat discouraged, this representative found
temporary
lodging at a local shelter, but after a few days, his belongings
were
stolen. Frustrated and dejected, he was on the verge of leavi ng
Chicago, abandoning his task all together. Hearing about his
difficulties, the DePaul University research team offered to pro-
vide the representative with free accommodations —first at the
home of one of the members of the research team and then at
DePaul University. The researchers provided him temporary
office
space, a telephone, and other resources so that he could make
the
necessary arrangements to establish the first Oxford House in
Chicago (which was called the DePaul house in appreciation for
the help offered by DePaul University).
As the relationship between DePaul University and the Illinois
Oxford House strengthened, members of the DePaul research
team
began to attend Oxford House meetings regularly, and Oxford
House representatives attended weekly research team meetings
at

DePaul University in return. Both groups spent 1 year getting to
know each other before embarking on data collection (Jason et
al.,
134 JASON
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1994). During these meetings, the Oxford House members
helped
to sensitize and adapt questions on the interviews to the
audience.
When collecting these data, it was apparent that small changes
helped us obtain data uncompromised by jargon.
Over a 7-year period, we collected pilot studies and continued
our collaborations with the local and national organization. For
example, we collaborated on writing a grant proposal with a
local
foundation to provide funds to hire a recruiter to open two
Oxford
Houses for women and children in the area. DePaul University
researchers also talked to reporters when members of the press
wrote articles about Oxford House. Finally, the research team

supplied some of their preliminary research findings to the
Oxford
House organization during a Supreme Court lawsuit against an
Oxford House in the state of Washington. The suit, based on a
zoning law that prohibited more than five unrelated people from
living in one dwelling, was representative of some
communities’
unwillingness to support Oxford House for fear of reducing
their
property values. Fortunately, the suit against Oxford House was
defeated, and the positive precedent the case set has had an
important impact on other Oxford Houses, similar residences,
and
other halfway houses.
During this time, a team of researchers at DePaul University
began seeking federal external funding to support larger and
more
sophisticated research studies on the process of communal
living
within Oxford House. The research team submitted multiple
NIH
proposals, but members of a scientific review committee recom-
mended that our team needed to evaluate the effectiveness of
Oxford House through a randomized outcome study. From a
research perspective, the utility of the design cannot be
questioned,
but the research team was hesitant to advance a methodology
that
could potentially upset the natural process of self-selection that
occurs within Oxford House. That is, members of each Oxford
House interview, discuss, and vote on whether an applicant
should
be admitted as a resident in their house. This democratic
process is
an important cornerstone to the Oxford House approach to

recov-
ery, and the researchers did not want to disrupt that process, as
doing so would fundamentally change the structure of how
Oxford
House operates.
When this dilemma was presented to Molloy, the founder of
Oxford House, he said he would support a random assignment
design. After extensive discussion between DePaul University
and
Oxford House organization members on the strengths and
possible
difficulties with adopting this design, we finally developed a
protocol that accommodated random assignment within Oxford
House’s democratic system of selection. In the proposed study,
individuals finishing substance abuse treatment would be ran-
domly assigned to either an Oxford House or usual aftercare,
with
follow-up assessments at 2 years. After years of continued
effort to
obtain external funding, DePaul researchers finally secured an
NIH
grant. When implementing the study, for those assigned to the
Oxford House condition, if one Oxford House did not accept a
participant, we would bring the individual to a second Oxford
House. Using this system, every individual who was assigned to
the Oxford House condition was accepted by the members of an
Oxford House. One could argue that there was some selection
bias
in that we only included individuals who had completed
substance
abuse treatment, but this allowed us to study individuals who
were
somewhat equivalent in their substance abuse histories.
We later learned that in the late 1980s, another independent

research group had approached Molloy with a request to do a
randomized outcome study of Oxford Houses. Molloy had
refused
this request, as he had no established relationship with the
inves-
tigators. Certainly, having a prior collaborative relationship
with
Oxford House helped the DePaul University researchers gain the
approval of Molloy, who was able to provide the organizational
support for a rigorous outcome study. Since 1999, our DePaul
University research team has conducted this NIH well-
controlled
study, and we believe that the results, to be released in the near
future, will have public policy implications (Jason, Olson,
Ferrari,
& Lo Sasso, in press). An official at Substance Abuse Mental
Health Services Administration has already begun writing a
posi-
tion paper on Oxford Houses, and he will recommend that the
houses be substantially expanded. He has relied almost
exclusively
on data from our studies to support his recommendations.
Today,
there are over a 1,200 Oxford Houses nationally, and this
number
is expected to rise in the future.
Finally, in an effort to assess how members of the Oxford House
community felt about the collaborative research, data from
Oxford
House representatives (individuals who were paid by DePaul
Uni-
versity to help collect data and work collaboratively with the
research team) were collected on the amount of dialogue and
communications, the way decisions were made, the influence
regarding research issues, the influence regarding

implementation
of the project, the investment in the research project, the level
of
trust in the research project, the degree of personal
identification
with DePaul University or Oxford House, the knowledge about
research methods, and the degree of feeling part of the research
team. Answers to these interview questions showed that our col -
laborators from the Oxford House project have felt positive
about
their experience with us, and their ratings significantly
improved
over time (Jason, Davis, Olson, Ferrari, & Alvarez, in press). It
is
also interesting that identification was about equal with DePaul
University and Oxford House at the start of the study, and over
time, the community collaborators’ association with our
research
team had not weakened or diminished their strong attachment
with
Oxford House. Regularly assessing community and academic
col-
laborators’ experiences with the research effort is an important
activity that can provide all parties a forum for better
understand-
ing their feelings for and expectations about the joint
collaborative
effort.
There are also several lessons that can be learned by practitio-
ners based on this case study involving DePaul University’s 14-
year collaborative experience with Oxford House. First, the col-
laboration allowed our group to gain a greater appreciation of
the
culture and unique needs of the Oxford House residents. When
practitioners invest time in cultivating these types of longer

term
relationships with customers, groups, and organizations, it is
very
possible that they will better understand issues confronting their
neighborhoods and ultimately be seen as a constructive force for
change within their communities. Such information might be
used
by practitioners to develop more convenient hours of operation,
new and more accessible services, and even new partnerships to
work together on solving community problems.
In addition, by devoting years to building a collaborative rela -
tionship with partners in the community, those representatives
became more invested and committed to the practitioners’ needs
or
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objectives. This is well illustrated with Molloy, who over time
developed a trusting relationship with the researchers, and this
was
a critical factor in his providing our group support to use

random-
ization in an NIH grant proposal. These types of long-term rela-
tionships might help practitioners develop the trust and support
from community members to form collaborations that develop
contracts or grants to secure local funding to bring new services
or
opportunities to a community.
Finally, when involving community members in our work, it
might be useful to regularly assess their feelings and attitudes
toward this collaborative process and also our attitudes toward
the
community members. Such assessments might provide a way to
diagnose problems, miscommunications or faulty expectations,
and also to provide a forum or foundation to celebrate
accomplish-
ments of and satisfaction with the collaborative relationship.
When
practitioners and community members feel positively about the
intervention and the collaboration, it might be more likely that
they
will support, endorse, and work toward sustaining the
intervention
over time.
Chronic Fatigue Syndrome
Practitioners can also be part of coalitions to help diagnose
serious unmet needs or challenges that face their communities.
As
one example, when a new disease syndrome emerges, studies on
prevalence can influence the amount of resources invested in
public research and treatment. Few federal and state funds
might
be allocated if it appears that such endeavors would only help a
very small segment of the population. This issue is well

illustrated
with the case of chronic fatigue syndrome (CFS), a debilitating
and
chronic illness causing considerable disability and impairment.
By the early 1990s, the general consensus was that CFS was a
relatively rare disorder affecting primarily White, middle-class
women. Prevalence estimates of this illness ranged from 2.0 –
7.3
persons per 100,000, suggesting that there were less than 20,000
individuals in the United States with this illness. But these esti-
mates were derived from studies in which physicians identified
patients who had unexplained fatigue-related symptoms and
then
referred those patients for a medical examination to determine
whether they met criteria for CFS.
Patient advocacy groups were skeptical of these low estimates
for a number of reasons. First, because many low-income
individ-
uals did not have access to medical settings, they might not
have
been included in the prevalence studies. Moreover, because
many
physicians doubted the existence of CFS, they might not have
made referrals to CFS epidemiologic research studies. The low
CFS prevalence numbers contrasted sharply with the high rates
of
telephone calls to the Center for Disease Control and Prevention
(CDC) seeking information about this illness, which ranged up
to
3,000 per month. Finally, the low prevalence numbers were not
compatible with the membership count in the national CFS self-
help organization.
In the early 1990s, Judith Richman, a sociologist, and I met

with
patient groups to listen to their concerns about these CFS epide-
miology studies. In response to these discussions, we assembled
a
multidisciplinary team of 15 professionals to collaborate with
people suffering from CFS on the design and implementation of
a
community-based CFS epidemiology study. These individuals
in-
cluded medical professionals, academic researchers, and
represen-
tatives from local self-help organizations. We then submitted a
grant proposal to the NIH to conduct our community-based epi-
demiological study that was designed to interview a large
random
sample of individuals that would not rely on physician
gatekeepers
for referrals to the study. Unfortunately, the NIH reviewers felt
that because prior CDC epidemiological studies had found a
very
low CFS prevalence rate, if samples were obtained by
interviewing
a random community-based sample, the sample size would need
to
be in the hundreds of thousands to identify an adequate number
with CFS, and such a large study would be prohibitively expen-
sive. The national CFS self-help organization then provided
fund-
ing to conduct a pilot community-based epidemiology study
with
a small random sample of about 1,000 participants. Persons with
CFS collaborated with the research team on the study design,
implementation, data analysis, and interpretation of the pilot
find-
ings. Using data from that study, which suggested considerably

higher CFS rates than previous studies, we submitted a revised
NIH grant application.
We ultimately received funding for this revised application. We
contacted a randomly selected community sample of over
18,000
individuals and provided those with self-reported symptoms of
CFS a comprehensive medical and psychiatric evaluation.
Individ-
uals with CFS from the local CFS self help group attended the
research meetings to provide valuable assistance in developing
the
research design, selecting the measures, training staff
interviewers,
and problem-solving difficulties encountered in the design and
implementation of the research study. The perspective of people
with CFS was invaluable in overcoming specific barriers that
arose
during the research process, such as transportation and
communi-
cation difficulties. On the basis of input from patients, we
devel-
oped ways to increase participation of low-income and minority
individuals to participate in our study. We accomplished this by
hiring interviewers who were bilingual to conduct the
interviews
and by providing participants transportation to the medical
facility
where the physical examinations occurred. In this way, we were
able to include individuals in our final sample who might other -
wise have been systematically excluded because they would not
have been able to fully understand questions in English or they
would not have had the resources to travel to our medical site
for
the evaluation.

The results of this epidemiological study indicated that the
point
prevalence of CFS was 422 per 100,000 (Jason et al., 1999),
suggesting that this illness may affect approximately 800,000
people in the United States, a considerably higher figure than
the
previous estimates. Women, Latinos, middle-aged individuals,
and
persons of middle to lower socioeconomic status were found to
be
at higher risk for this illness. For example, CFS prevalence
rates
for women were 522 per 100,000, and when comparing the prev-
alence of CFS in women with the prevalence of other diseases,
CFS emerges as a serious women’s health concern (e.g., preva-
lence rates of women with AIDS are 12/100,000; women with
breast cancer are 26/100,000; women with lung cancer are 33/
100,000; and women with diabetes are 900/100,000). The
findings
directly contradicted the perception that upper-class Caucasian
women were the primary individuals with this illness.
Moreover,
91% of people identified as having CFS in this sample had not
been previously diagnosed by a physician prior to participation
in
136 JASON
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e
A
m
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A
ss
oc
ia
tio
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or
o
ne
o
f i
ts
a
lli
ed
p
ub
lis
he
rs
.
T
hi
s

ar
tic
le
is
in
te
nd
ed
s
ol
el
y
fo
r t
he
p
er
so
na
l u
se
o
f t
he

in
di
vi
du
al
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nd
is
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ot
to
b
e
di
ss
em
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at
ed
b
ro
ad

ly
.
the study, which highlights the limitations of prior CFS
epidemi-
ological studies based solely on samples recruited from
hospitals
or primary care providers. Almost all existing studies of CFS
have
been conducted with primarily Caucasian samples generated
from
hospital and tertiary care settings, and yet in community-based
samples, minorities are more likely to have this syndrome and
with
more disabling symptoms.
Citizen participation was critical in helping to design and im-
plement our community-based study, and the findings provided
a
more accurate estimate of CFS prevalence. The findings were
then
given back to those citizens as well as other activists and self-
help
organizations to aid them in their lobbying efforts to raise
aware-
ness and to encourage more funding for this illness. As one
concrete example, the recommendations for epidemiology
studies
using random community-based samples were ultimately
adopted
by the CDC and integrated into their research, and the CDC has
now recommended that all future CFS epidemiological research
involve random community samples.

There are several lessons that might be instructive to practitio-
ners based on this case study dealing with CFS. The
participation
and feedback from persons with CFS was invaluable in
overcom-
ing biases in estimating prevalence rates. Scientists in the early
1990s considered CFS to be a relatively rare disorder, affecting
primarily White, middle-class women, but these prevalence esti-
mates were derived from inappropriate physician referral
method-
ologies, which omitted lower income and minority persons with
CFS. Though patients suggested that the prevalence numbers
were
too low, many researchers and governmental bodies neglected to
listen to them. This example suggests that mental health profes-
sionals need to take concerns of patient groups into account,
and
then we might begin the process of rethinking the justification
for
certain myths and challenging biases that can stigmatize
individ-
uals with difficult to understand illnesses.
In addition, when practitioners actively attend to patient con-
cerns and include their perspectives in the intervention and re -
search process, better research methods might be adopted. In the
case of CFS, when community-based samples were used, they
yielded more accurate CFS prevalence estimates. At the local
level, practitioners who actively solicit the needs of patients
and
consumers might be able to offer or even design more targeted
and
culturally relevant assessments and services. For example, just
as
our research team felt it was critical to have bilingual

interviewers
on our staff, practitioners might also have in their
neighborhoods
individuals who do not speak English. Securing the services of a
translator or even hiring a new staff member who is fluent in
the
dialects spoken by members of the community might be a good
way of establishing services that are more culturally relevant
and
accessible to community members.
Finally, there might be unrecognized advantages that become
available to practitioners when they bring clients, consumers,
and
even community leaders into the planning process. Involvement
of
such policy-level individuals might provide access to resources,
new connections within the local government, opportunities to
be
involved in legislative reform, and even participation in
commu-
nity coalitions that help educate their community on critical
health
issues. In the case example above, when advocates for patients
with CFS were brought into the process, they helped provide
critical funding for pilot work and ultimately widely
disseminated
this study’s results. One tangible public policy benefit was the
raised awareness in medical and public policy arenas, and CFS
is
no longer considered a rare disease only affecting middle- to
upper-class Caucasian Americans.
Discussion

This article evaluated a participatory perspective across three
relatively long-term collaborative efforts and explored possible
links with public policy outcomes. There are lessons in this
work
for the practitioner audience, as it is possible that their work
could
be enhanced by obtaining greater involvement by citizens–
consumers– clients. Although most readers are not conducting
these types of large-scale research projects, they often may be
involved in making decisions regarding behavioral health
policies,
be it at the local (an individual center), state, or even national
level.
For example, psychologists have enlisted community support in
their efforts to achieve mental health parity (Abrahamson,
Steele,
& Abrahamson, 2003). Clearly, there are benefits and
challenges
of gaining citizen participation in the types of work that we do
within our communities. One challenge, for example, is the
diffi-
culty in determining who represents the community, given that
there are often many different individuals and groups who might
make this claim. For most politically contentious issues, there
are
conflicting points of view among citizen participants as to how
we
might proceed. These issues are explored below and are meant
to
provide practitioners some guidelines and helpful suggestions
that
they can apply in their day-to-day professional lives.
As we all know, there are groups and organizations with mark-
edly contrasting views about what represents the public good.
For

example, although youth access programs and youth possession
laws represent one of the more popular vehicles for galvanizing
public support for antismoking activities and establishing social
norms against youth tobacco use, these policies remain
controver-
sial within the public health community. Several groups within
the
antitobacco movement have argued that we should abandon
youth
access programs and instead focus on other public health
measures
such as taxes, media campaigns, and smoke-free workplaces and
homes. However, these public health initiatives are not free of
unintended side effects. For example, raising taxes can lead to
more theft or even black market smuggling, media campaigns
are
often overwhelmed by counteradvertising efforts by tobacco
com-
panies, and smoke-free work settings can result in smokers con-
gregating at building entrances modeling this negative behavior.
Clearly, there is a need to conduct rigorous studies to determine
whether and under what conditions and settings these types of
negative second-order side effects occur.
Others within the public health community have argued that
programs like ours that focus on youth access to tobacco do not
affect teen smoking prevalence because as fewer merchants sell
to
minors, teens will turn to social sources to obtain tobacco. We
would argue, however, that the fact that young smokers are be-
ginning to shift to social sources for tobacco suggests that for
some
youth smokers, the barriers to purchasing retail tobacco are
strengthening. Rather than increasing the ease with which
youths
access tobacco by clearing away the obstacles to purchasing to-

bacco, assessing the effects of even tougher barriers to retail
and
social sources of tobacco may be more appropriate. In this
debate,
T
hi
s
do
cu
m
en
t i
s
co
py
ri
gh
te
d
by
th
e
A
m

e
di
ss
em
in
at
ed
b
ro
ad
ly
.
it is interesting to note that local agencies, such as the police,
are
most supportive of these types of regulations, whereas public
health officials are much more ambivalent or opposed to them,
particularly possession fines.
These tensions between different vested interest groups are not
uncommon for practitioners. Although we might be taught that
our
best position would be not to take stands and remain neutral,
this
is often difficult to maintain. Clearly, if we are being brought in
to
evaluate a program or policy, not having a vested interest in
different outcomes helps reduce bias in our work. Yet, we will

often be asked by our community collaborators and consumers
as
to how we feel about a certain issue, whether it involves zoning
on
our block or crime protection initiatives in our neighborhoods.
Refusing to support a particular community initiative can lead
to
neighbors and consumers perceiving us as uncaring and insensi-
tive. Not taking sides is often a luxury we cannot afford. When
inappropriate myths and derogatory comments were being made
toward people with CFS, I felt obligated to get involved in
better
understanding the sociodemographic characteristics of people
with
this illness. In this case, I felt that inappropriate epidemiologic
work had been conducted, and I wanted to use more rigorous
research methods to explore this issue. When a community is
extremely divided on a particular issue, sometimes it is best to
use
our analytic skills to investigate an issue. In other cases, we
might
use our mediational skills to find a common ground, and such
actions might also be most appreciated by feuding
organizations.
The values of our patients, consumers, activists, and community
members do influence the framing of questions, and we should
be
most aware of this process. There can be good outcomes of this,
as
had I not been open to fining minors for tobacco possession, an
admittedly controversial issue in the late 1980s and even today,
the
collaborative study with the Woodridge police official would
not
have occurred. On the other hand, opportunities for gaining

fund-
ing and access to influential political figures can also easily co-
opt
our efforts and result in our supporting regressive causes,
organi-
zations, or institutions. As an example, at one point, I was ap-
proached by an organization that offered considerable funds if I
were to take over the process of training and supervising the
recruiters who open up Oxford Houses. I considered this an
inap-
propriate activity, as Molloy and his organization had this
respon-
sibility. Clearly, my values and allegiance with my community
partner helped me to make the right decision on this issue.
From the examples described, when citizens and community
groups are involved in a collaborative effort, the particular
com-
munities or organizations with which one works will possibly
have
an influence on the nature of the questions that are explored and
the design of the methods that are used. However, deciding on
who
represents the community is not a simple question. Relying
solely
on formal representatives or poorly chosen informal leaders may
lead to inappropriate representatives. Established
representatives
may be controversial in communities with histories of internal
conflict. Further, many communities of interest in health
research
have no formal representation at all. In addition, the goals of
participatory methods are sometimes political in nature, and
voices
in the field can, at times, be strident and polemical. Further,
participatory approaches are not always feasible or practical. In

some cases, a more attainable goal may be finding ways to
increase
both the participation of community members and the range of
voices that are heard and heeded when developing community
projects.
Clearly, there are some unique challenges with regard to citizen
and consumer participation, and these include difficulties in
iden-
tifying appropriate community representatives and the possible
perils of siding with inappropriate groups. To the extent that
one
becomes involved in politically sensitive issues, such as
abortion
rights, exploitation of undocumented workers, or lack of
services
provided to the homeless, there will be multiple parties with
vested
interests in the outcomes. The higher the stakes and more
volatile
the issue, the more critical it is to clarify one’s own values as a
first
step. The lack of adequate aftercare for substance abusers a fter
treatment certainly influenced me to partner with Molloy, who I
perceived as having an important innovation worthy of being
evaluated. When I heard patients complaining about government
studies that vastly underrepresented the extent of CFS, this
moti-
vated me to read the literature and see some of the serious
meth-
odological flaws in extant studies. Our values do count, and
they
have a significant influence on both how we spend our time and
which individuals or groups we ultimately partner with in our
collaborations.

In conclusion, whether one is involved in a large community
coalition or an effort to improve services at one’s practice,
active
efforts to hear the voices of the consumer in the programs has
the
potential to positively influence the success of one’s work.
Citizen
participation can mean simply agreeing to assess the attitudes of
consumers, actively collaborating in developing a coalition, and
even providing the community members with veto power on
critical decisions. Participation can also occur at different
points in
time, from generating the original idea, planning the design of
the
intervention or study, and implementing the service or
assessment.
Practitioners need to decide not only what individuals to bring
into
the process but how to recruit them and what roles they might
have. In this article, I suggest that such citizen participation can
increase the quality of our work. Whether a practitioner is
dealing
with issues of deciding where to locate a new facility or the
types
and kinds of services offered, community feedback can be
instruc-
tive. The examples in this article also suggest that there might
be
important public policy benefits that accrue as a result of
partici-
patory methods, and such approaches might also guide future
efforts to expand integrated models of health care (DeLeon, Gi -
esting, & Kenkel, 2003).
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Received March 8, 2005
Revision received August 15, 2005
Accepted September 29, 2005 �
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A
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ia
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or

o
ne
o
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ts
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ed
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.
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is
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y
fo
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he
p
er
so
na
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se
o
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in
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u
se

r a
nd
is
n
ot
to
b
e
di
ss
em
in
at
ed
b
ro
ad
ly
.

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