Content uploaded by David S Metzger
Author content
All content in this area was uploaded by David S Metzger
Content may be subject to copyright.
an alterna-
tive to top-down
technical assistance from ex-
perts to practitioners or com-
munity residents that may help
to ensure that research results
address real needs and will actu-
ally be used.3
THE CONVERGENCE OF
RESEARCH AND
PARTICIPATION
Participatory research has a
rich and honored tradition in
community development, espe-
cially in developing countries,
where it has enabled social
change and community develop-
ment projects among populations
who were suspicious of the mo-
tives of Western researchers.4
Much of the renaissance of par-
ticipatory research since the
1960s has taken place in social,
educational, and health services
development and delivery, some
in public health. In health ser-
vices, nursing has led the way,
with collaborative studies be-
tween academic nurses and nurs-
ing administrators and staff
aimed at improving nursing roles
and difficult working conditions
that have resulted from changes
in health care systems.5
In public health, the revival
of participatory research (also
referred to as participatory ac-
tion research) has been most
notable in minority health.6–8
Native American and Canadian
First Nations communities, for
exam-
ple, after
decades of serving as subjects
for anthropologic and epidemio-
logic studies, behavioral sur-
veys, and health education pro-
gram evaluations, have put the
brakes on external researchers’
exploiting their circumstances
while providing very little bene-
fit to their communities. Simi-
larly, African Americans living
in inner cities have noticed that
their lives have been described
publicly by researchers in un-
flattering—if sympathetic—ways,
but they have seen little come
of it besides embarrassment and
shame.
The recognition by these and
other communities that they
needed new information about
their circumstances that only
original research could render
converged with a growing recog-
nition by academic and other
public health researchers that
they could no longer get the data
they needed without more active
cooperation of the communities.
This convergence led to a re-
striking of the power balance be-
tween the observers and the ob-
served. Research subjects became
more than research objects. They
gave more than informed con-
sent; they gave their knowledge
and experience to the formula-
tion of research questions and
American Journal of Public Health |December 2001, Vol 91, No. 121926 |Community-Based Participatory Research |Peer Reviewed |Green and Mercer
COMMUNITY-BASED PARTICIPATORY RESEARCH
Can Public Health Researchers and Agencies
Reconcile the Push From Funding Bodies
and the Pull From Communities?
Lawrence W. Green, DrPH, and Shawna L. Mercer, PhD
Responding to growing impa-
tience with the limited application of
research findings to health practices
and policies, both funding bodies
and communities are demanding
that research show greater sensitiv-
ity to communities’ perceptions,
needs, and unique circumstances.
One way to assure this is to employ
participatory research—to engage
communities at least in formulating
research questions and interpreting
and applying research findings and
possibly also in selecting methods
and analyzing data.
"Community" should be inter-
preted broadly as all who will be af-
fected by the research results, in-
cluding lay residents of a local area,
practitioners, service agencies,and
policymakers. Participatory research
should not be required of every proj-
ect, but when results are to be used
for, in, and by communities, those
communities should collaborate not
only in applying findings but also in
determining the ways in which the
findings are produced and inter-
preted. (Am J Public Health. 2001;
91:1926–1929)
FOR MANY YEARS, MUCH HAS
been made of the need to make
better use of research, apply re-
search results more assiduously,
disseminate research findings
more effectively, and synthesize
research into evidence-based
guidelines and “best practices”
for more immediate application
by practitioners. Recently, it has
become increasingly clear that
there is a need to increase the
public’s science and health liter-
acy, so that people will consume
research more intelligently and
school-aged children will be able
to integrate scientific methods
and facts more fully into their ed-
ucational experience.1,2
Many of these appeals have a
patronizing tone to them, which
suggests that the researcher is in
the best position to decide what
practitioners and the public need
and then give it to them. The ap-
peal for increased science liter-
acy at least acknowledges a role
for the public in the interpreta-
tion of science, but even here
the assumption is that science
will be delivered and consumed.
Yet the field of public health
yields ample evidence that dis-
seminating the results of studies
and telling people how they
should incorporate this informa-
tion into their lives produces
minimal behavior change. In
contrast, participatory research—
research that is generated collab-
oratively in a partnership be-
tween scientists and others—has
reemerged in recent decades as
December 2001, Vol 91, No. 12 |American Journal of Public Health Green and Mercer |Peer Reviewed |Community-Based Participatory Research |1927
COMMUNITY-BASED PARTICIPATORY RESEARCH
FIGURE 1—Levels of participation and collaboration of different groups in participatory research (PR).
methods to be applied in their
communities. They became more
than the victims described in
studies of their health problems
and living conditions; they be-
came active partners in identify-
ing key problems and in using
the research findings to advocate
policies and programs and in pro-
gram development, monitoring,
and evaluation.
WHOSE PARTICIPATION,
IN WHAT RESEARCH?
The origins of participatory
research sketched above might
give the impression that it is a
research method designed solely
for researcher–public interac-
tion. On the contrary, it is not a
research method, nor is it limited
to the direct relationship be-
tween academic researchers and
the public. Participatory research
is an approach that entails in-
volving all potential users of the
research and other stakeholders
in the formulation as well as the
application of the research. A
wide range of research meth-
ods—epidemiologic, experimen-
tal, survey, focus-group, qualita-
tive interview—can be applied in
the service of participatory re-
search. The choice depends on
the methods called for by the re-
search questions and the feasibil-
ity of the methods in the particu-
lar circumstances.
The issue of whose participa-
tion needs to be solicited and in-
corporated in participatory re-
search hinges on who is to be
most directly affected by the re-
search results. Because much of
the discussion about participa-
tory research in this issue of the
Journal and elsewhere is in the
context of community develop-
ment and community programs,
the assumption tends to be that
participatory research necessarily
engages the lay community. Typi-
cally, “community” is understood
as a local geopolitical entity, as in
the term “community-based par-
ticipatory research.” If, however,
the notion of community in-
cludes other groupings of people
sharing common characteristics
or interests, or if the purpose
under consideration is something
other than community develop-
ment, there emerge both the
need and the opportunity for un-
dertaking participatory research
with groups other than commu-
nity residents.
We therefore urge a broader
application of participatory re-
search, one in which participatory
research is seen as systematic in-
quiry, with the collaboration of
those affected by the issue being
studied, for the purposes of edu-
cation and taking action or effect-
ing social change.9 With this more
generic definition, “participants”
can be public health practitioners
and agencies as well as their con-
stituents and clients or commu-
nity residents.
What are the upper and lower
bounds of participation for deter-
mining whether research is par-
ticipatory? Maximum participa-
tion occurs when stakeholders re-
main active partners throughout
the study—in the formulation of
research questions, selection of
methods, and analysis, interpreta-
tion, and application of findings.
Minimally, stakeholders should
be involved at least at the front
end of the study, in formulating
research questions, and at the
back end, in interpreting and ap-
plying the findings. This demarca-
tion of the range of participatory
research clarifies the distinction
between participatory research
and basic research, which typi-
cally involves only researchers,
and action research, which neces-
sarily includes those involved in
the action situation (usually prac-
titioners) as subjects of, rather
than as participants, in the re-
search. The types of research and
various stakeholders are shown
in Figure 1.
How does one determine the
extent to which participatory re-
search should be incorporated
into a given research project?
One rule of thumb lies in deter-
mining the complexity of the re-
search methods and analyses.
Typically, there is no need (and
no justification) to drag volunteer
participants through a highly
technical and labor-intensive re-
search process as long as they
have the opportunity to help
shape the research questions and
interpret the findings. Figure 2 il-
lustrates the varying levels of
participation by different actors
and stakeholders in different
types of research and community
development.
CURRENT USES OF
PARTICIPATORY
RESEARCH AND THE
VALUE OF EXTENDING ITS
PURVIEW
The happy confluence of mu-
tual interests and action that can
be achieved through participa-
tory research remains the excep-
tion rather than the rule. Indeed,
Congress funded the Prevention
Research Centers (PRCs) pro-
gram of the Centers for Disease
Control and Prevention (CDC) to
develop innovative ways to con-
American Journal of Public Health |December 2001, Vol 91, No. 121928 |Community-Based Participatory Research |Peer Reviewed |Green and Mercer
COMMUNITY-BASED PARTICIPATORY RESEARCH
Source. Green et al.9
FIGURE 2—Degree of participation by different stakeholders, by type of research or community action.
duct research and demonstration
activities that would result in im-
proved public health practice. Yet
a 1996 Institute of Medicine
panel reviewing the PRCs con-
cluded that the partnership be-
tween universities, public health
agencies, and communities was
falling short of legislative intent.10
David McQueen, Patricia
Riley, Marshall Kreuter, and
Lynda Doll, former national Di-
rectors and supervisors of the
PRCs program, have led the ef-
fort to ensure genuine commu-
nity input into all 26 PRCs as
well as at the national level.11, 12
In this issue of the Journal, Dr.
Kenneth Olden, the Director of
the National Institute of Envi-
ronmental Health Sciences
(NIEHS) and a strong advocate
of participatory research, de-
scribes how the NIEHS is re-
sponding to this demand.13
Thus, certain funding bodies are
providing the push on academic
researchers to engage their sub-
jects more actively; communi-
ties are providing the pull.
How can participatory re-
search contribute to better use of
science, more assiduous applica-
tion of research results, more ex-
tensive dissemination of research
findings, and synthesis of evi-
dence-based guidelines and “best
practices” from previous research
for more immediate application
by practitioners? First, we en-
courage the expansion of partici-
patory research, both in the
number of studies undertaken
and in application of a broader
definition of participatory re-
search to involve other stake-
holders—including practitioners,
other service providers, public
health departments, and policy-
makers—in addition to lay com-
munity members.
Second, it strikes us that what
is most confining about “best
practices,” and what makes them
subject to suspicion from local
public health departments, practi-
tioners, and other potential users,
is their origins in distant places
and under special circumstances.
The research that is synthesized
into best practices comes from
carefully controlled trials con-
ducted in other places—that is,
not locally—under the direction
and with the resources of “for-
eign” scientific groups.
Local practitioners and policy-
makers have every reason to sus-
pect that their circumstances are
different from those represented
in the studies that went into for-
mulating best practices.14 Partici-
patory research offers them an
opportunity to examine their
own circumstances, to pilot-test
the best practices within their
own context, and to adapt these
practices to their own needs.
Such local adaptations, in turn,
provide valuable feedback to the
research community as it seeks
to expand the arsenal of evi-
dence-based guidelines and best
practices into other areas of pub-
lic health and as it seeks to ex-
plore, account for, and overcome
disappointingly low levels of be-
havior change among lay individ-
uals, practitioners, organizations,
and populations.
Public health agencies can
provide a bridge between univer-
sity-based researchers and com-
munity-based projects, using par-
ticipatory research at the agency
level to adapt best practices and
at the community level to ensure
relevance of the research to the
community’s needs and actions.
Engaging communities and prac-
titioners will not invariably im-
prove the internal validity of re-
search, but almost certainly will
improve its external validity—that
is, its applicability and usability
in the settings in which the re-
search occurs.
About the Authors
At the time of writing, Lawrence W.
Green and Shawna L. Mercer were with
the Office on Smoking and Health, Na-
tional Center for Chronic Disease Preven-
tion and Health Promotion, Centers for
Disease Control and Prevention, Atlanta,
Ga. Shawna L. Mercer is also a postdoc-
toral fellow of the Canadian Institutes for
Health Research and the Canadian
Health Services Research Foundation.
Requests for reprints should be sent to
Lawrence W. Green, DrPH, Office of Ex-
tramural Prevention Research, Public
Health Practice Program Office, CDC,
4770 Buford Hwy NE, Mail Stop K-56,
Atlanta, GA 30341-3724 (e-mail:
lgreen@cdc.gov).
This commentary was accepted Sep-
tember 18, 2001.
Note. The views expressed in this com-
mentary do not necessarily represent the
views or policy of the CDC.
Contributors
Both authors contributed to the concep-
tion, writing, and editing of this paper.
References
1. Nutbeam D. Health literacy as a
public health goal: a challenge for
contemporary health education and
communication strategies in the 21st
century. Health Prom Int. 2000;15;
259–267.
2. Ratzan SC. Health literacy: commu-
nication for the public good. Health
Prom Int. 2001;16;209–214.
3. Park P, Brydon-Miller M, Hall B,
Jackson T, eds. Voices of Change: Partici-
patory Research in the United States and
Canada. Toronto, Ontario: OISE Press;
1993.
December 2001, Vol 91, No. 12 |American Journal of Public Health MacQueen et al. |Peer Reviewed |Community-Based Participatory Research |1929
COMMUNITY-BASED PARTICIPATORY RESEARCH
Increased emphasis on community collaboration indicates the need for con-
sensus regarding the definition of community within public health.This study ex-
amined whether members of diverse US communities described community in
similar ways.
To identify strategies to support community collaboration in HIV vaccine tri-
als, qualitative interviews were conducted with 25 African Americans in Dur-
ham, NC; 26 gay men in San Francisco, Calif; 25 injection drug users in Phila-
delphia, Pa; and 42 HIV vaccine researchers across the United States.Verbatim
responses to the question “What does the word community mean to you?”were
analyzed. Cluster analysis was used to identify similarities in the way commu-
nity was described.
A common definition of community emerged as a group of people with diverse
characteristics who are linked by social ties, share common perspectives, and
engage in joint action in geographical locations or settings.The participants dif-
fered in the emphasis they placed on particular elements of the definition. Com-
munity was defined similarly but experienced differently by people with diverse
backgrounds.These results parallel similar social science findings and confirm
the viability of a common definition for participatory public health. (Am J Pub-
lic Health. 2001;91:1929–1938)
4. Kassam Y, Mustapha K. Participa-
tory Research: An Emerging Alternative
Methodology in Social Science Research.
New Delhi, India: Participatory Research
Network; 1982.
5. Ramudu L, Bellet B, Higgs J, Lati-
mer C, Smith R. How effectively do we
use double staff time? Aust J Adv Nurs.
1994;11(3):5–10.
6. Frankish CJ, George A, Daniel M,
Doyle-Waters M, Walker M. Participa-
tory Health Promotion Research in Can-
ada: A Community Guidebook. Ottawa,
Ontario: Minister of Public Works and
Government Services Canada; 1997.
Catalogue no. H39-418/1-1997E.
7. Langton PA, ed. The Challenge of
Participatory Research: Preventing Alco-
hol-Related Problems in Ethnic Communi-
ties. Washington, DC: US Dept of
Health and Human Services; 1995.
Publication SMA 95-3042.
8. Macaulay AC, Delormier T,
McComber AM, et al. Participatory re-
search with native community of Kah-
nawake creates innovative Code of Re-
search Ethics. Can J Public Health.
1998;89:105–108.
9. Green LW, George MA, Daniel M,
et al. Study of Participatory Research in
Health Promotion. Ottawa, Ontario:
Royal Society of Canada; 1995.
10. Stoto MA, Green LW, Bailey LA,
eds. Linking Research and Public Health
Practice: A Review of CDC’s Program of
Centers for Research and Demonstration
of Health Promotion and Disease Preven-
tion. Washington, DC: National Acad-
emy Press; 1997.
11. Caburnay CA, Kreuter MW, Don-
lin MJ. Disseminating effective health
promotion programs from prevention
research to community organizations.
J Public Health Manage Prac. 2001;7;
81–89.
12. Doll L, Berkelman R, Rosenfield A,
Baker E. Extramural prevention re-
search at the Centers for Disease Con-
trol and Prevention. Public Health Rep.
2001;116 (suppl 1):10–19.
13. Olden K, Guthrie J, Newton S. A
bold new direction for environmental
health research. Am J Public Health.
2001;91:1964–1967.
14. Green LW. From research to “best
practices” in other settings and popula-
tions. Am J Health Behav. 2001;25:
165–178.
What Is Community? An Evidence-Based Definition
for Participatory Public Health
Kathleen M. MacQueen, PhD, MPH, Eleanor McLellan, MA, David S.
Metzger, PhD, Susan Kegeles, PhD, Ronald P. Strauss, PhD, Roseanne
Scotti, MA, Lynn Blanchard, PhD, and Rober t T. Trotter II, PhD
PUBLIC HEALTH PROGRAMS
and policy are often defined at
regional and national levels, but
community is, literally, where
prevention and intervention take
place. Community context has
been identified as an important
determinant of health outcomes.1
Recognition of these facts has led
to increased calls for community
collaboration as an important
strategy for successful public
health research and programs.2–9
Reviews of the effectiveness of
collaborations for improving
community health indicate that
they can be effective9–11 but that
there are many potential obsta-
cles to realizing the benefits of a
participatory approach in both
public health research and pro-
grams.8,11–15 In particular, the
lack of an accepted definition of
community can result in different
collaborators forming contradic-
tory or incompatible assumptions
about community and can under-
mine our ability to evaluate the
contribution of community col-
laborations to achievement of
public health objectives.9,16 We
are more likely to validate the ef-
fectiveness, or ineffectiveness, of
collaborative models if we can
identify core dimensions of com-
munity that have external valid-
ity across communities, are con-
sistent with measures that have
internal validity within diverse
communities, and have predictive
value for community-level health
outcomes.
Efforts to develop and test
HIV vaccines have highlighted
social challenges that make com-
munity support, trust, and in-
volvement critical for the long-
term success of preventive HIV
vaccines.17 Project LinCS (Link-
ing Communities and Scientists)
was undertaken to identify effec-
tive strategies for meeting these
challenges. HIV vaccine efficacy
trials and, ultimately, immuniza-
tion programs require national
coordination across diverse com-
munities. The primary Project
LinCS research objective cen-
tered on identifying ways to
make efforts such as large-scale
efficacy trials and immunization
programs as participatory as pos-
sible. A related objective was to
demonstrate the value added to
research when community mem-
bers actively participate in the
design, implementation, and in-
terpretation of the research.
For this commentary, we ana-
lyzed data from 1 component of
Project LinCS that asked people
how they defined community.
The interviews were conducted
with diverse groups, thus allow-
ing us to look at the potential ef-
fect of local and historic experi-
ence on the way people defined
community and to determine
American Journal of Public Health |December 2001, Vol 91, No. 121930 |Community-Based Participatory Research |Peer Reviewed |MacQueen et al.
COMMUNITY-BASED PARTICIPATORY RESEARCH
whether a single definition of
community could effectively en-
compass the diversity of local
experience.
METHODS
Data Collection
Project LinCS participants in-
cluded African Americans in
Durham, NC; gay men in San
Francisco, Calif; injection drug
users (IDUs) in Philadelphia, Pa;
and HIV vaccine researchers in
locations across the United
States. The 3 local research
communities were selected
through a competitive funding
process. Through a study design
collaboratively developed by re-
searchers and local community
advisory boards convened for
the project, a total of 76 face-to-
face, in-depth, open-ended inter-
views were conducted in Phila-
delphia, Durham, and San
Francisco to identify broad is-
sues, including how people de-
fined community. The interviews
were conducted between De-
cember 1995 and May 1996.
Another 42 in-depth interviews
were conducted between Sep-
tember 1997 and September
1998 via telephone with HIV
vaccine researchers across the
United States; these interviews
included a parallel question on
defining community. Study pro-
tocols and interview guides were
approved by local and Centers
for Disease Control and Preven-
tion institutional review boards;
written informed consent was
obtained from all participants
(the vaccine researchers mailed
back signed consent forms be-
fore their interviews).
Interviews were tape-recorded,
transcribed into computer text
files, and coded by interview
question. Verbatim responses to
the following question were then
extracted for analysis: “The word
‘community’ means different
things to different people. What
does the word community mean
to you? What is a community?”
Data Analysis
The analysis team developed a
structured codebook through a
standardized iterative process.18
The extracted text was read and,
on the basis of the text content, a
set of initial codes and definitions
was proposed. None of the codes
were specified before the text was
read. Two people then indepen-
dently coded randomly selected
text segments from each partici-
pant group and compared results.
Coding discrepancies were dis-
cussed with the analysis team
and the codebook was revised ac-
cordingly. This process was re-
peated until the coders reached a
satisfactory level of agreement.
To minimize the possibility
that relevant text was missed, all
text was double-coded. Inter-
coder agreement for text associ-
ated with each participant group
was then assessed for each code
by κscores.19 For each code with
a κof less than 0.8, discrepan-
cies in coding were reviewed by
this commentary’s first author,
who then decided whether to
apply the code to the text in
question. For codes with a κof
0.8 or greater, discrepancies
were reviewed by the 2 coders,
who then decided which code
applications to retain. Text coding
and intercoder agreement assess-
ments were done with a develop-
mental version of the software
program AnSWR.20
For each participant, numeric
listings summarized whether or
not each code was applied to
that person’s text. Numeric ma-
trices were then generated to
summarize which codes oc-
curred together in the text of all
persons within each participant
group. From the matrices, com-
plete-link Johnson’s hierarchical
clusters were generated in
ANTHROPAC21 to identify core
elements used to define commu-
nity. The cluster analysis helped
identify similarities in the way
people defined community and
the extent to which those simi-
larities cut across participant
groups.
RESULTS
The 4 participant groups var-
ied in terms of a number of so-
ciodemographic characteristics
beyond those immediately reflec-
tive of the intentional targeted
sampling. Participants who were
scientists or from San Francisco
tended to have higher levels of
education and higher incomes
than participants in Philadelphia
and Durham. None of the scien-
tists and only 1 of the Philadel-
phia participants lacked health
insurance, although they differed
in terms of the primary source of
insurance (employer based for
scientists and government based
for IDUs). Approximately one
third of San Francisco and Dur-
ham participants lacked health
insurance. The mean number of
years lived in the current neigh-
borhood of residence was longest
for IDUs in Philadelphia (16.5
years), followed by scientists
(7.2), African Americans in Dur-
ham (5.7), and gay men in San
Francisco (2.6).
Of the 118 participants inter-
viewed, 113 provided definitions
of community (the question was
omitted in interviews with 3 par-
ticipants in Durham and 2 in San
Francisco). Coding identified 17
distinct themes or elements that
appeared in the definitions of 2
or more respondents (Table 1).
Hierarchical cluster analysis iden-
tified 4 clusters among the
themes. A core cluster contained
5 elements: locus, sharing, joint
action, social ties, and diversity.
Each core element reflected some
aspect of face-to-face interaction.
A second cluster centered on
group-based elements of commu-
nity: divisiveness, leverage, plural-
ism, and responsibility. These ele-
ments reflected social cohesion
and community involvement and
often acted as boundary-setting
or -maintaining mechanisms.
Each element of these 2 clusters
was cited by at least 4 members
of each participant group.
The third and fourth clusters
centered on elements that re-
flected stresses experienced by
communities or their members.
The first stress cluster included
the elements of criminality and
drug use. The second centered on
the elements of AIDS and unity.
Core Elements of Community
Each of the 5 core elements—
locus, sharing, joint action, social
ties, and diversity—was cited by
20% or more of respondents
(Table 1). Locus was included in
77% and sharing was included
in 58% of all definitions. Both
locus and sharing were included
in 42% of responses, and at least
1 of the 2 was included in 93%
of them. Locus and sharing were
each cited alone (i.e., without dis-
cussion of other core elements)
in 16% of responses. Neither
joint action nor diversity was dis-
cussed alone, and social ties were
discussed alone by 2 people
(2%). Sharing and locus were dis-
cussed by some participants as
alternative ways to define com-
munity, while others described
them as closely interconnected.
Definitions that included all 5
elements were elicited by 8 par-
ticipants (7%); another 13 defini-
tions (11%) included all of the
December 2001, Vol 91, No. 12 |American Journal of Public Health MacQueen et al. |Peer Reviewed |Community-Based Participatory Research |1931
COMMUNITY-BASED PARTICIPATORY RESEARCH
TABLE 1—Elements Coded From Definitions of Community From All Sources Within Project LinCS
(n = 113)
Definitional Element Brief Definition No. of Participants Citing Element (%)
Locus Physical location; place with people 87 (77)
Sharing Shared perspective; common interests 65 (58)
Action Joint action or activities 57 (50)
Ties Social ties, relationships 56 (50)
Diversity Differences or diversity (e.g., age, race,income, behavior) 27 (24)
Divisiveness Fragmentation, division into disputing factions 17 (15)
Leverage Effectiveness; ability to influence resource availability 17 (15)
Responsibility Importance of accepting consequences of individual action 17 (15)
Pluralism Coexistence of 2 or more distinct cultural traditions 15 (13)
Criminality Impact of criminal activities 12 (11)
Unity Community fellowship 15 (13)
Drug use Impact of drug use and addiction 11 (10)
Nonexistent No community; concept holds no meaning 9 (8)
AIDS Impact of HIV/AIDS 7 (6)
Services Availability of social services and programs 6 (5)
Religion Religious or spiritual focus 5 (4)
Survival Adaptability, resourcefulness 4 (4)
Other elements 10 (9)
core elements except diversity.
These 2 combinatorial groups ac-
count for 27% of all definitions
offered (Table 2). Each of the
core elements is described be-
low; the quotations in the box on
p 1933 illustrate how these ele-
ments were woven into actual
responses.
Locus: a sense of place. Locus
encompassed the idea of com-
munity as something that could
be located and described, denot-
ing a sense of place, locale, or
boundaries. One can be “in” a
community physically whether
or not one identified as being a
member of the community. Peo-
ple referred to locus in terms of
specific areas (neighborhood,
corner, block; street, road, high-
way; zip code area; village, city,
county), with reference to spe-
cific settings (home, household;
workplace; local taproom or bar,
corner grocery store, newsstand,
sandwich shop, bookstore; com-
munity building, swimming pool,
recreation center; church,
school), and in terms of general
locations (an area or place
where people live together; en-
vironment or surroundings).
Sharing: common interests and
perspectives. Sharing referred to
the existence of shared perspec-
tives and common interests that
contributed to a sense of com-
munity. Community members
were described as sharing the
following:
• Values, norms, mind-set, view-
point, ideology, beliefs, visions
• Passions, obsessions, inter-
ests, likes and dislikes, opinions,
concerns
• Activities, goals, objectives
• Symbols, jargon
• Skin color, sexual identity
• Tribulations, oppression, re-
pression, history
Sharing contributed to a
sense of community through the
following:
• Common issues, threads, be-
liefs, factors
• Being in tune with each other
• Comfort, familiarity, togeth-
erness, identity, recognition
Joint action: a source of cohe-
sion and identity. Joint action was
described as a source of commu-
nity cohesion and identity. A
conscious intent to generate
community through action was
not viewed as necessary; rather,
joint action was seen as leading
naturally to the creation of com-
munity. Community was de-
scribed as emerging from the
joint actions of people who did
the following:
• Socialize, hang out, converse,
intermingle, gossip, “shoot the shit”
• Work at the polls, volunteer
at the library, run phone banks,
train people, work on projects
• Keep people informed about
resources, services, and what’s
happening
• Paint houses; paint the street;
push brooms; shovel snow; keep
up the area; clean up the block,
neighborhood, yard, or house;
have block parties
• Give food, share resources,
provide for neighbors in need
• Watch over, check up on, look
out for, keep an eye on each other
• Set values and goals for the
children, have their butts kicked
a little bit if they’re slacking off,
push for the betterment of every-
one, do something positive, im-
prove the neighborhood
• Get together, do things to-
gether, work together, act to-
gether, participate, plan, get
things done, get inspired, engage
in activities, give input, accom-
plish goals
• Write, speak, educate, en-
courage, pray
Social ties: the foundation for
community. Social ties were de-
scribed in terms of interpersonal
relationships that formed the
foundation for community. In
some instances, such relation-
ships were described as requiring
little, if any, effort or ongoing ac-
knowledgment on the part of the
individual. The types of relation-
ships cited included the follow-
ing: family, parents, siblings,
cousins; roommates, household;
lovers, partners; friends, neigh-
bors, associates, coworkers, ac-
quaintances; role models, support
groups.
In addition, participants often
described characteristics that
they associated with community-
based relationships or people.
Community, participants said,
meant ties with people
• Whom they can trust
• With whom they feel com-
fortable
• Who care about each other
American Journal of Public Health |December 2001, Vol 91, No. 121932 |Community-Based Participatory Research |Peer Reviewed |MacQueen et al.
COMMUNITY-BASED PARTICIPATORY RESEARCH
TABLE 2—Co-Occurrence of Core Elements in Definitions of
Community From All Sources Within Project LinCS
No. of Respondents
Co-Occurring Elements (%) (n =113)
All 5 (locus, sharing, joint action,social ties diversity) 8 (7)
Any 4 22 (20)
Diversity, locus,sharing, social ties 2 (2)
Joint action, locus, sharing, social ties 13 (12)
Joint action, diversity,sharing, social ties 3 (3)
Joint action, diversity,locus, social ties 2 (2)
Joint action, diversity,locus, sharing 2 (2)
Any 3 26 (23)
Locus, sharing, social ties 5 (4)
Diversity, sharing, social ties 1 (1)
Diversity, locus,sharing 3 (3)
Joint action, locus, social ties 6 (5)
Joint action, locus, sharing 8 (7)
Joint action, diversity,sharing 1 (1)
Joint action, diversity,locus 2 (2)
Any 2 33 (29)
Sharing, social ties 1 (1)
Locus, social ties 11 (10)
Locus, sharing 6 (5)
Diversity, sharing 3 (3)
Joint action, social ties 2 (2)
Joint action, sharing 3 (3)
Joint action, locus 7 (6)
Only 1 20 (18)
Locus 12 (11)
Sharing 6 (5)
Social ties 2 (2)
No core elements cited 4 (4)
• With whom they interact,
hang out, choose to be sociable,
spend time, connect
• Who are known to them
• Whom they always see in
the background or around them
• With whom they grew up
Diversity: social complexity
within communities. Diversity
emerged in discussions of social
complexity (e.g., communities
within communities, stratification,
interwoven groups, hidden com-
munities, or multiple levels of
community). As used here, diver-
sity excluded culturally based
ethnic distinctions (see the discus-
sion of pluralism below). Discus-
sions of diversity focused on a
larger societal view of community
and made reference to differ-
ences in interpersonal interaction
that resulted from the following:
• Different levels of interaction
between people, from the inti-
mate to the superficial
• Demographic and social di-
versity in the form of race, ethnic
origin, socioeconomic status, sex-
uality, drug use, profession
• The presence of specialized
groups that performed needed
tasks, such as activists and ser-
vice providers
• The presence of groups that
identified with overlapping or
multiple communities
• The presence of groups that
were disowned, stigmatized,
stereotyped, or distrusted within
communities
As seen in Figure 1A, the
saliency of each of these ele-
ments for the core definition of
community varied by partici-
pant group. Action, locus, and
social ties were the most consis-
tently discussed elements across
all groups. Sharing predomi-
nated in interviews among sci-
entists and gay men in San
Francisco, while diversity was
discussed relatively infrequently
by all groups except the San
Francisco participants. Thus, the
relative saliency of sharing and
diversity appears to be an im-
portant distinguishing character-
istic of communities.
Despite group differences in
the saliency, frequency, and co-
occurrence of the 5 core ele-
ments, the overall response
pattern indicates that these 5
elements were universally recog-
nized within each community as
a whole, if not by every commu-
nity member. In anthropologic
terms, the elements constitute a
common cultural domain.22,23
Together, they suggest a full def-
inition of community as a group
of people with diverse character-
istics who are linked by social
ties, share common perspectives,
and engage in joint action in ge-
ographic locations or settings.
Group-Based Elements of
Community
Like the core elements, the
group-based elements of com-
munity—divisiveness, leverage,
pluralism, and responsibility—
had meaning across all of the
participant groups but were less
frequently cited than the core
elements (Figure 1B). Overall, at
least 1 of the group-based ele-
ments was cited by 36 (32%) of
the participants, including 18
(75%) of the participants from
San Francisco, 8 (32%) from
Philadelphia, 4 (18%) from Dur-
ham, and 6 (14%) of the scientist
participants. Nineteen partici-
pants cited 2 or more group-
based elements. Discussions cen-
tered on the implications of
individual-level behavior for the
community as a whole and on
the relationship of the commu-
nity to larger society (see box
p 1934).
Divisiveness referred to de-
scriptions of community frag-
mentation or a lack of unity,
often expressed as an overem-
phasis on individualism and
self-interest, or as attitudes that
hindered unity and cooperation.
Divisiveness was often dis-
cussed in the context of the
need for or a perceived lack of
responsibility on the part of
community members.
Discussions of leverage cen-
tered on the potential ways that
groups or individuals can bring
about positive or negative conse-
quences for the community as a
whole. Pluralism referred to dis-
cussions of the maintenance of
distinctions between coexisting
ethnic groups. Unlike the core
element of diversity, which fo-
cused on variability in a wide
range of individual-level charac-
teristics, pluralism implied ethnic
and cultural distinctions among
people living in the same area.
Cultural pluralism is an anthropo-
logic concept defined as “social
and political interaction within
the same society of people with
different ways of living and
thinking.”24(p658) The challenges
of living in a pluralistic commu-
December 2001, Vol 91, No. 12 |American Journal of Public Health MacQueen et al. |Peer Reviewed |Community-Based Participatory Research |1933
COMMUNITY-BASED PARTICIPATORY RESEARCH
BCore Elements of Community
DURHAM AFRICAN AMERICAN: I think community can be defined in 2 different ways. There’s a community that you define as such because you
are forced by where you live, by your upbringing to be around those people.This isn’t a voluntary type of thing. This is your community because
you live there. The place you call your hometown is your community because you grew up there, you knew people there. You didn’t really have a
choice as to whether that would be your community or not, it just was.And so you were molded and informed by that surrounding, by that
society, but it wasn’t a voluntary type. And that’s how I would describe my work community. It is my community because I have to work there
and it is my workplace. That’s not to say that I don’t choose at times to include these people in other aspects of my life. But certainly,the
people I choose to be sociable with most aren’t people I share the same job with.
SCIENTIST: A community is a fairly broad term in my mind that encompasses groups of people working together toward the same goal. . . .
I would say I identify with the HIV research community, the HIV care community,my own personal community with my family, certainly my
regional community.
INTERVIEWER: Okay, when you say family community,is that just your immediate family?
SCIENTIST: I mean school communities related to my children’s schooling, and the communities here in [place name] that are involved in
providing support, such as the [AIDS foundation name]. And that’s what I mean by community.. . . I mean,there’s my neighborhood. That’s what
I mean by geographical locale. Political community,I suppose I would say that as a Democrat I’m a participant in the political groups here in
town and nationally. .. . I think that our communities are less dependent these days on actual physical adjacency, if you will,that the Internet
has brought many people together, and when I say I’m part of the AIDS research community, I think of that as a worldwide community.
SAN FRANCISCO GAY MAN: I lived alone for a while after [my partner] died and I really hated it. I really felt very lonely and now I live in a
situation with a good friend. . . .There’s a sense of comfort in that. Because, you know, he’s single and I’m single and we have a group of friends
and there’s a lot of connection, that we kind of create community. I think we as gay and lesbian people create family too in a lot of ways that
are not biological and I think [in] some ways that sense of creating family is creating community, that’s what we support ourselves and
surround ourselves with.
PHILADELPHIA IDU: Well,in the drug culture, I wouldn’t call that a community, you know. I would just call that a part of the community that’s
just tryin’ to survive but [what] community means to me is a way people look out for one another and they do things together,insofar as
socializing together, praying together. You know,they have a mutual bond but see, you know, and some of that goes on in the community,you
know, and that drug culture can be right here but you still have a group of people that tries to keep the neighborhood together and try to set
the right values for the children.
nity were described primarily by
African American, Latino, and
Asian/Pacific Islander gay men
in San Francisco who attempted
to navigate simultaneously
among problems related to their
ethnicity (e.g., racism, restrictive
immigration laws) and those re-
lated to their sexual identity (e.g.,
homophobia, rejection by family
members).
Responsibility was discussed in
terms of the way people were or
should be responsible for their
own behavior, including how
their behavior reflected on or
affected the community as a
whole. As such, leverage and re-
sponsibility were often discussed
together.
The Impact of Stress on a
Community
Two clusters emerged that
centered on stresses affecting
community. The first centered on
the negative effects of criminality
and drug use. As seen in Fig-
ure 1C, although these were
more frequently discussed by
participants in Durham and Phil-
adelphia, they were described as
elements that undermine com-
munity in San Francisco as well.
In contrast to the stresses of drug
use and criminality, AIDS was
more likely to be described as
something that brought people
together in a common struggle,
increasing a sense of unity. For
one Durham participant, the vio-
lent death of a child prompted a
similar response, motivating her
to work to improve circum-
stances in her community (see
box p 1935).
Statements that community
was nonexistent were made by 6
respondents from Philadelphia
and 3 from San Francisco. These
discussions often included state-
ments about diversity or pluralism
as an obstacle to the development
of community, by contributing to
a lack of common identity or un-
dermining a sense of responsibil-
ity to the group. For the Philadel-
phia drug users, the lack of
community was sometimes seen
as pervasive, or the drug culture
was viewed as a noncommunity
that was both separate from and
surrounded by a functional local
community that included the ele-
ments of locus, action, ties, and
sharing.
DISCUSSION
The Elements of Community
Collectively, the Project LinCS
participants described commu-
nity by using a limited set of ele-
ments that reflect concepts pre-
viously noted in the social
science literature. Four of the
core community elements identi-
fied here through empiric
means—locus, sharing, joint ac-
tion, and social ties—are com-
monly found in social science
definitions of community. In an
early literature review of 94
definitions, Hillery25 found that
two thirds cited social interac-
tion, geographic area, and com-
mon ties as essential elements of
community life, and almost
three fourths cited area and so-
cial interaction. A review of an
additional 60 definitions subse-
quently published in the social
science literature found little
change beyond a slight increase
in emphasis on “people with
common ties residing in a com-
mon geographic area.”26
Taking a different approach,
McKeown and colleagues27 ana-
lyzed the way community was
conceptualized in 4 classic ethno-
graphic studies conducted by 2
anthropologists at different stages
in their careers. They noted over-
all agreement in the use of 4
basic attributes to describe com-
munity: locality, biological and
social membership, common in-
stitutions, and shared actions.
From a psychological perspective
and using an empiric approach
that parallels our own, Chavis
and colleagues28 identified 4 ele-
ments composing a sense of
American Journal of Public Health |December 2001, Vol 91, No. 121934 |Community-Based Participatory Research |Peer Reviewed |MacQueen et al.
COMMUNITY-BASED PARTICIPATORY RESEARCH
Note. San Francisco =gay men in San Francisco, Calif; Philadelphia = injection drug users
in Philadelphia, Pa; Durham= African Americans in Durham,NC; HIV vaccine
researchers =HIV vaccine researchers across the United States.
FIGURE 1—Saliency of definitional elements of community by
participant group: (A) core elements; (B) group-based elements;
(C) stress elements.
BGroup-Based Elements of Community
Divisiveness and Responsibility:
DURHAM AFRICAN AMERICAN: Now it’s, like,everybody is on their own. Nobody cares
about what happens, and you don’t even have people participating in community-based
projects.
PHILADELPHIA IDU: You got somebody over here with a big car, plenty money,and the
kids see this. They’re influenced by this, but by the same token,there’s his grandmother,
his mother, his aunt trying to say, “Well, no, that’s not the way, come on, we goin’ to
church, or we goin’ to the Center,” you know.
Leverage and Responsibility:
SAN FRANCISCO GAY MAN: Things are gonna start to grow,and if you wanted those
little businesses to survive, why weren’t you giving them your business? Why weren’t you
going to lunch at their place? Why weren’t you buying books at their store? Oh, you
weren’t? But yet . . . you want to choose who comes in there? I said that’s not life,that’s
not business.
PHILADELPHIA IDU: It was like community because people were concerned. I can go
down the street and break out somebody’s window playin’ baseball,right, and before I got
home, my mother would know about it and everybody that was involved.You know. It’s
because everybody was concerned about what was going on in the neighborhood. Just
like, on the same note, if we didn’t have any food, you know, and somebody would get
word of it, friends would bring us food over.
Pluralism:
PHILADELPHIA IDU: When I was growin’ up there it was a White neighborhood, now it’s
all Spanish and all Black and all everything, Chinese, and Koreans and so it’s kind of not
a community anymore, it’s so mixed up that there’s no nothing there anymore. Koreans
messin’ with Koreans,Whites messin’ with Whites, Blacks messin’with Blacks and it’s all
mixed up there and nobody bothers nobody no more.
community: membership, influ-
ence, integration and fulfillment
of needs, and shared emotional
connection.
Using data from a study in a
suburb of Toronto, Wellman and
Wortley29 argued that locus was
of decreasing importance for
urban communities and that these
were best described in terms of
“personal community networks”
that are socially diverse in compo-
sition, spatially dispersed, and
sparsely knit. Others have sug-
gested that the decreasing impor-
tance of locus actually leads to a
sense of the loss of community.
For example, Glynn30 evaluated
the relationship between people’s
ideal sense of community and
their perception of their actual
community in 3 diverse settings
(an Israeli kibbutz and 2 dissimilar
cities in Maryland) and found that
neighborhood identification was
important for the development of
an actual sense of community.
Patrick and Wickizer9re-
viewed social science definitions
of community with an eye to-
ward developing and implement-
ing effective community-level
health interventions. They identi-
fied 3 broad conceptual ap-
proaches to the definition of
community: those that defined
community as place,associal in-
teraction, and as social and politi-
cal responsibility. The concept of
social and political responsibility
is similar to our core element of
joint action, combined with our
group-based elements. Patrick
and Wickizer9(p51) offered a work-
December 2001, Vol 91, No. 12 |American Journal of Public Health MacQueen et al. |Peer Reviewed |Community-Based Participatory Research |1935
COMMUNITY-BASED PARTICIPATORY RESEARCH
BImpact of Stress on a Community
PHILADELPHIA IDU: Do you know how many people was tryin’ to rob me outta that coat
right there? [Points to her coat on hanger.] I mean, these are people that’s in the
community, okay,and that this is supposed to be a community—why is e verybody doin’
what they doin’ to one another?
SAN FRANCISCO GAY MAN: Crystal meth has really bothered me, just ’cause I see it as
really damaging to my community. .. . I see people whose lives are getting all messed up,
and I see that it’s everywhere. I mean,it’s almost epidemic in the gay community.
DURHAM AFRICAN AMERICAN: I never mingled or associated with anyone. I didn’t want to
be a part, you know, but I think the thing that really brought me out was when the [child]
got killed over here. . . .The child was sittin’ out on the stoop, other people were sittin’ out
on their stoop and stuff, and it was someone shootin’ at another person, and one of the
shots hit the child and she got killed over here in our neighborhood, and I think that is
what basically brought me out to want to be a part of the community and get something
done about what’s goin’ on over here.
SAN FRANCISCO GAY MAN: . .. as I get older, I have a stronger sense of [community],or a
stronger sense of commitment to the community. I mean,you know, that’s why I’m getting
increasingly involved with AIDS activities.
SAN FRANCISCO GAY MAN: I don’t think we have much of a gay community, unfortunately.
I wish we did. But we don’t because of what we are.We’re everything. We’re Black and
we’re White and we’re poor and we’re rich,so how can we have a gay community—I think
that’s a really silly word, the “gay community,” because it doesn’t really exist.That’s like
the White, male, heterosexual community. I think that’s silly.
PHILADELPHIA IDU: You ask me what the community is. Nothin’, zilch.To me there is no
damn community.
ing definition of community as
“the entire complex of social rela-
tionships in a given locale, and
their dynamic interaction and
evolution in working toward [the]
solution of health problems.”
The importance of local diver-
sity has not been previously ar-
ticulated in definitions of com-
munity, although the effect of
such diversity on health mea-
sures has been noted. For exam-
ple, Sampson and colleagues31
pointed to the need to explore
the meaning and sources of vari-
ation within neighborhoods or
local communities for collective
efficacy for children. Zakus and
Lysack16 noted that communities
are rarely, if ever, a homoge-
neous whole and that this repre-
sents a major challenge for suc-
cessful community participation
in setting health policy. The fact
that diversity emerged as a core
element in our empiric explo-
ration of definitions of commu-
nity was driven to a great extent
by the experiences of the gay
men who were interviewed. San
Francisco is a national and inter-
national meeting ground for gay
men. The interviews we con-
ducted suggest that many of
them are consciously seeking to
build a community based on a
positive valuing of unity, diver-
sity, and cultural pluralism. With
increased mobility and immigra-
tion throughout the United
States, the importance of diver-
sity for community structure and
function is likely to increase in
other locations and for other
populations. The challenges pre-
sented by local diversity, in turn,
are likely to become increasingly
important for public health ef-
forts as well.
Implications of the
Experience of Community for
Collaboration
The saliency of the different
elements of community for each
of our 4 participant groups had
implications for the ways in
which our collaborations devel-
oped. For gay men in San Fran-
cisco, a strong sense of shared
history and perspective was a
dominant theme, followed by a
sense of identity with a specific
location, the creation of strong
and lasting social ties, established
avenues for joint action, and the
role of diversity. This profile is
superficially similar to the one
elicited from the vaccine re-
searchers; however, particular
elements were discussed less fre-
quently than in San Francisco.
Significant differences also ex-
isted with regard to how the ele-
ments were discussed. Most of
the San Francisco participants
had thought about community,
and many were struggling to rec-
oncile their need for community
with a sense of marginalization
from society at large. In contrast,
the scientists tended to describe
themselves as well grounded in
multiple communities.
The profiles for Durham and
Philadelphia also had a surface
resemblance to each other. In
contrast with San Francisco
participants and the scientists,
Durham and Philadelphia partici-
pants viewed locus as the princi-
pal element of community. This
was especially true for IDUs in
Philadelphia. Both groups em-
phasized the importance of joint
action and social ties, while mini-
mally discussing the role of di-
versity. African American partici-
pants in Durham included more
college-educated and nonhetero-
sexual individuals than did Phila-
delphia participants and, perhaps
as a result, were somewhat more
likely to discuss the role of
shared perspectives for commu-
nity than were Philadelphia par-
ticipants. In both Durham and
Philadelphia, most people de-
scribed community as a “given”
in their immediate environment.
However, for IDUs, the given
community environment was less
likely to be described as sup-
portive than for African Ameri-
cans in Durham.
These differences in the way
people perceived and talked
about the core elements of com-
munity suggest the need for mul-
tiple models of collaboration for
public health research and pro-
grams. In fact, the collaborations
we established in San Francisco,
Durham, and Philadelphia illus-
trate this need. At each site, re-
searchers worked with a commu-
nity advisory board (CAB), but in
different ways.
The San Francisco collabora-
tion. In San Francisco, commu-
nity advocates and activists were
collaborating with HIV vaccine
researchers before Project LinCS
was funded. Consistent with the
emphasis on sharing seen in
Figure 1A, the CAB members
placed a high value on opportu-
nities for in-depth discussion
with both local and nonlocal
Project LinCS collaborators. Sim-
ilarly, they recognized the im-
portance of existing social ties
and activities and were careful
not to allow Project LinCS to
draw energy away from other
HIV vaccine work. As a result of
their long involvement in treat-
ment and prevention activities,
American Journal of Public Health |December 2001, Vol 91, No. 121936 |Community-Based Participatory Research |Peer Reviewed |MacQueen et al.
COMMUNITY-BASED PARTICIPATORY RESEARCH
many San Francisco CAB mem-
bers had a sophisticated under-
standing of research. Reflecting
the saliency of joint action for
the community, the CAB used
this knowledge to take an active
role in developing the protocol
and interview guide for the sci-
entists. Additionally, half of the
scientist interviews were con-
ducted by a San Francisco CAB
member (with full support from
the Philadelphia and Durham
CABs). The CAB also collabo-
rated with local investigators in
the development of a complex
targeted sampling plan to ensure
maximal diversity of Project
LinCS participants, reflecting
their awareness of the important
role of diversity and pluralism in
their community.
The Durham collaboration. In
Durham, the African American
community was beginning to
mobilize around AIDS when
Project LinCS began. Here, the
local investigators had to reach
out widely to people and organi-
zations with links to the African
American community. A socio-
economically diverse group of
representatives came together
and volunteered to work with
the researchers, meeting at a his-
torically African American uni-
versity campus in Durham. Con-
sistent with our analysis that
showed an emphasis in Durham
on locus and joint action, the
CAB focused its efforts on mak-
ing sure that the project pro-
vided tangible benefits to the
local community. These efforts
resulted in a brochure on ques-
tions to ask when volunteers
were invited to participate in re-
search and a local newspaper in-
sert on lessons learned from the
project, which was distributed to
more than 11 000 houses in pre-
dominantly African American
neighborhoods.
The Philadelphia collaboration.
The Philadelphia investigators
had a long-standing relationship
with IDUs that centered on a
storefront research program.
About a year before Project
LinCS began, the investigators
invited study participants to form
a CAB. The meetings were ini-
tially chaired by the principal in-
vestigator, but later the CAB
members established their own
set of rules and took on increas-
ing responsibility for the func-
tioning of the board. Philadelphia
LinCS participants emphasized
locus, action, and social ties in
their definitions of community.
Similarly, the CAB defined its
primary role as one of maintain-
ing and building linkages be-
tween the research staff and the
IDUs in the surrounding neigh-
borhoods, a community that
functioned largely through infor-
mal structures and at the margins
of society.
The Role of Community
Representation for
Collaboration
Israel and colleagues13 and
Zakus and Lysack16 noted that
participatory approaches such as
ours that rely on representation
can lead to conflicts with regard
to how community is defined
and who may legitimately repre-
sent the community. Our experi-
ences, and our empiric data, sug-
gest that an important element
for success may be ensuring that
CAB representatives are actively
connected to diverse people in
their local communities and em-
powered to function in ways that
are meaningful to their commu-
nity base. Other research sup-
ports this view. Conway and col-
leagues32 compared perceptions
of health priorities among local
District Health Council members
and among a random sample of
household residents in Chicago
and Cook County, Illinois. The
results showed substantial agree-
ment in priorities, indicating that
advisory boards can effectively
represent community perspec-
tives regarding health priorities.
Jewkes and Murcott33 presented
results of a qualitative assess-
ment of the uses, meanings, and
interpretations of community
participation in the context of the
World Health Organization’s
Healthy Cities Project as imple-
mented in the United Kingdom.
In interviews with 50 partici-
pants drawn from health, local
government, and voluntary sec-
tors, they found that “being
known” was the most fundamen-
tal requirement of an effective
representative. Data from a case
study by Bond and Keys34(p37)
support the feasibility of empow-
ering multiple community groups
simultaneously through a single
advisory board “when the board
culture promoted inclusionary
group processes and the activa-
tion of member resources.”
If collaboration is to be an ef-
fective component of public
health research and programs, it
will require a greater under-
standing of the way people inter-
act individually and as groups.
The definition of community pro-
vided in this commentary sup-
plies a potential framework for
investigating such interactions.
Each of the core elements com-
posing community (locus, shar-
ing, joint action, social ties, and
diversity) can be evaluated rela-
tive to public health outcomes
through existing social science
models, including social network
analysis,35–37 sense of commu-
nity,38–42 social capital,43,44 cul-
tural domain analysis,22,23,45,46
and geographic information sys-
tems.47 Such models provide a
solid foundation for a systematic
approach to community-level and
community-based public health
research and programs.
CONCLUSIONS
The results of our analysis
point to a core definition of com-
munity as a group of people with
diverse characteristics who are
linked by social ties, share common
perspectives, and engage in joint
action in geographical locations or
settings. Our results further sug-
gest that a cookbook approach to
participatory programs and re-
search will not work because the
experience of community differs
from one setting to another.
Rather, each research collabora-
tion, and each level of collabora-
tion from the local to the na-
tional and the international, must
reconcile the differences and sim-
ilarities among the participating
communities.
Community collaboration in
public health programs and re-
search presents many challenges,
in part because community has
been defined in ambiguous and
contradictory ways. Despite im-
portant differences in the experi-
ence of community, our study
suggests that people largely agree
about what community is. The
empiric evidence, in turn, is bol-
stered by established social sci-
ence theory. Additionally, exist-
ing social science tools provide a
strong foundation for measuring
and evaluating the contributions
of community collaboration to
the achievement of public health
objectives.
Thus, a sound empiric and
theoretic basis exists for achiev-
ing consensus on a definition of
community for public health.
Consensus will facilitate the sys-
tematic comparison of local pop-
ulations by directing attention to
a set of core elements for mea-
December 2001, Vol 91, No. 12 |American Journal of Public Health MacQueen et al. |Peer Reviewed |Community-Based Participatory Research |1937
COMMUNITY-BASED PARTICIPATORY RESEARCH
surement. Systematic compari-
son, in turn, will facilitate hypoth-
esis testing and strengthen the
scientific study of the role of
community in public health. For
example, it could help us identify
functional thresholds for the core
elements, such that groups above
the threshold are significantly
more likely to experience benefi-
cial health outcomes than those
below the threshold. In other
words, it can help us understand
how to build and support “good”
communities that enhance the
health of their members. It can
help us understand which char-
acteristics or combinations of
characteristics are necessary or
sufficient for supporting interme-
diate goals such as the sustain-
ability of prevention programs or
the diffusion of beneficial health
practices. And it can provide a
sound theoretic basis for building
successful community collabora-
tions in public health through the
systematic evaluation of who par-
ticipates, why they participate,
what they share, what they do,
and how participants are con-
nected to each other and to their
constituencies.
About the Authors
At the time of the study, Kathleen M.
MacQueen and Eleanor McLellan were
with the National Center for HIV, STD,
and TB Prevention, Centers for Disease
Control and Prevention, Atlanta, Ga.
David S. Metzger and Roseanne Scotti are
with the Center for Studies of Addiction,
University of Pennsylvania, Philadelphia.
Susan Kegeles is with the Center for AIDS
Prevention Studies, University of Califor-
nia at San Francisco. Ronald P. Strauss is
with the Schools of Dentistry and Medi-
cine, University of North Carolina at
Chapel Hill. Lynn Blanchard is with
Lehigh Valley Hospital, Allentown, Pa.
Robert T. Trotter II is with the Department
of Anthropology, Northern Arizona Uni-
versity, Flagstaff.
Requests for reprints should be ad-
dressed to the Office of Communications,
National Center for HIV, STD, and TB
Prevention, Centers for Disease Control
and Prevention, Mail Stop E-06, Atlanta,
GA 30333.
This commentary was accepted June
29, 2001.
Contributors
K.M. MacQueen contributed to the con-
ception, analysis, and interpretation of
data and was the principal author. E.
McLellan contributed to analysis, inter-
pretation, and authorship. D.S. Metzger,
S. Kegeles, R.P. Strauss, and L. Blan-
chard contributed to the conception, ac-
quisition of data, and critical revision. R.
Scotti contributed to analysis, interpreta-
tion, and acquisition of data. R.T. Trotter
II contributed to the conception, analy-
sis, interpretation, and critical revision.
Acknowledgments
This research was supported by Centers
for Disease Control and Prevention coop-
erative agreements U48/CCU409660
(University of North Carolina at Chapel
Hill), U64/CCU910851 (University of
California at San Francisco), and U64/
CCU310867 (University of Pennsylvania).
References
1. Marmot MG, Bobak M, Smith GD.
Explanations for social inequalities in
health. In: Amick BC, Levine S, Tarlov
AR, Walsh DC, eds. Society and Health.
New York, NY: Oxford University Press
Inc; 1995:172–210.
2. Butterfoss FD, Goodman RM,
Wandersman A. Community coalitions
for prevention and health promotion.
Health Educ Res. 1993;8:315–330.
3. Principles of Community Engage-
ment. Atlanta, Ga: Centers for Disease
Control and Prevention, Public Health
Practice Program Office; 1997.
4. Fawcett SB, Lewis RK, Paine-
Andrews A, et al. Evaluating commu-
nity coalitions for prevention of sub-
stance abuse: the case of Project
Freedom. Health Educ Behav. 1997;24:
812–828.
5. George MA, Green LW, Daniel M.
Evolution and implications of PAR for
public health. Health Promot Educ.
1996;3:6–10.
6. Macaulay AC, Delormier T,
McComber AM, et al. Participatory re-
search with native community of Kah-
nawake creates innovative code of re-
search ethics. Can J Public Health. 1998;
89:105–108.
7. Flaskerud JH, Winslow BJ. Concep-
tualizing vulnerable populations health-
related research. Nurs Res. 199 8 ; 4 7:
69–78.
8. Roussos ST, Fawcett SB. A review
of collaborative partnerships as a strat-
egy for improving community health.
Annu Rev Public Health. 2000;21:
369–402.
9. Patrick DL, Wickizer TM. Commu-
nity and health. In: Amick BC, Levine S,
Tarlov AR, Walsh DC, eds. Society and
Health. New York, NY: Oxford Univer-
sity Press Inc; 1995:46–92.
10. Gillies P. Effectiveness of alliances
and partnerships for health promotion.
Health Promot Int. 1998;13:99–120.
11. Kreuter M, Lezin N. Are Consortia/
Collaboratives Effective in Changing
Health Status and Health Systems? A
Critical Review of the Literature. Atlanta,
Ga: Health 2000 Inc; 1998.
12. Beeker C, Guenther-Grey C, Raj A.
Community empowerment paradigm
drift and the primary prevention of
HIV/AIDS. Soc Sci Med. 1998;46:
831–842.
13. Israel BA, Schulz AJ, Parker EA,
Becker AB. Review of community-based
research: assessing partnership ap-
proaches to improve public health.
Annu Rev Public Health. 1998;19:
173–202.
14. Dearing JW, Larson RS, Randall
LM, Pope RS. Local reinvention of the
CDC HIV Prevention Community Plan-
ning Initiative. J Community Health.
1998;23:113–126.
15. Nichter M. Project community di-
agnosis: participatory research as a first
step toward community involvement in
primary health care. Soc Sci Med. 1984;
19:237–252.
16. Zakus JDL, Lysack CL. Revisiting
community participation. Health Policy
Plann. 1998;13:1–12.
17. Collins C. Sustaining Support for
Domestic HIV Vaccine Research: Social
Issues Over the Long Haul of Human Tri-
als. San Francisco: Center for AIDS Pre-
vention Studies, University of California;
July 1996. Monograph series, occa-
sional paper no. 2.
18. MacQueen KM, McLellan E, Kay
K, Milstein B. Codebook development
for team-based qualitative analysis. Cul-
tural Anthropol Methods J. 1998;10:
31–36.
19. Carey JW, Morgan M, Oxtoby MJ.
Intercoder agreement in analysis of re-
sponses to open-ended interview ques-
tions: examples from tuberculosis re-
search. Cultural Anthropol Methods J.
1996;8:1–5.
20. Strotman R, McLellan E, Mac-
Queen KM, Milstein B. AnSWR: Analy-
sis Software for Word-Based Records,
Version 2 [computer program]. Atlanta,
Ga: Centers for Disease Control and
Prevention; 1999.
21. Borgatti SP. ANTHROPAC 4.0
[computer program]. Natick, Mass: Ana-
lytic Technologies; 1996.
22. Borgatti SP. Elicitation techniques
for cultural domain analysis. In: Schen-
sul JJ, LeCompte MD, Nastasi BK, Bor-
gatti SP, eds. Enhanced Ethnographic
Methods. Walnut Creek, Calif: AltaMira
Press; 1999:115–151.
23. Bernard HR. Research Methods in
Anthropology. 2nd ed. Thousand Oaks,
Calif: Sage Publications; 1994.
24. Haviland WA. Cultural Anthropol-
ogy. 6th ed. Chicago, Ill: Holt & Win-
ston; 1990.
25. Hillery GA. Definitions of commu-
nity: areas of agreement. Rural Sociol.
1955;20:111–124.
26. Willis CL. Definitions of commu-
nity, II: an examination of definitions of
community since 1950. South Sociolo-
gist. 1977;9:14–19.
27. McKeown CT, Rubinstein RA,
Kelly JG. Anthropology, the meaning of
community, and prevention. In: Felner
RD, Jason LA, Hess RE, Moritsugu JN,
eds. Prevention: Toward a Multidiscipli-
nary Approach. New York, NY: The Ha-
worth Press; 1987:35–64.
28. Chavis DM, Hogge JH, McMillan
DW, Wandersman A. Sense of commu-
nity through Brunswik’s lens: a first
look. J Community Psychol. 1986;14:
24–40.
29. Wellman B, Wortley S. Different
strokes from different folks: community
ties and social support. Am J Sociol.
1990;3:558–588.
30. Glynn TJ. Neighborhood and sense
of community. J Community Psychol.
1986;14:341–352.
31. Sampson RJ, Morenoff JD, Earls F.
Beyond social capital: spatial dynamics
of collective efficacy for children. Am
Sociol Rev. 1999;64:633–660.
32. Conway T, Hu TC, Harrington T.
Setting health priorities: community
boards accurately reflect the prefer-
ences of the community’s residents.
J Community Health. 1997;22:57–68.
33. Jewkes R, Murcott A. Community
representatives: representing the “com-
munity”? Soc Sci Med. 1998;46:
843–858.
34. Bond MA, Keys CB. Empower-
ment, diversity, and collaboration: pro-
moting synergy on community boards.
Am J Community Psychol. 1993;21:
37–57.
35. Scott J. Social Network Analysis: A
Handbook. Thousand Oaks, Calif: Sage
Publications; 1991.
36. Morris M. Epidemiology and social
networks: modeling structured diffusion.
In: Wasserman S, Galaskiewicz J, eds.
Advances in Social Network Analysis: Re-
search in the Social and Behavioral Sci-
ences. Thousand Oaks, Calif: Sage Publi-
cations; 1994:26–52.
American Journal of Public Health |December 2001, Vol 91, No. 121938 |Community-Based Participatory Research |Peer Reviewed |Strauss et al.
COMMUNITY-BASED PARTICIPATORY RESEARCH
37. Rothenberg RB, Potterat JJ, Wood-
house DE, et al. Social network dynam-
ics and HIV transmission. AIDS. 1998;
12:1529–1536.
38. McMillan DW, Chavis DM. Sense
of community: a definition and theory.
J Community Psychol. 1986;14:6–23.
39. Sagy S, Stern E, Krakover S.
Macro- and microlevel factors related to
sense of community: the case of tempo-
rary neighborhoods in Israel. Am J Com-
munity Psychol. 1996;24:657–676.
40. Robinson D, Wilkinson D. Sense of
community in a remote mining town:
validating a neighborhood cohesion
scale. Am J Community Psychol. 1995;
23:137–148.
41. Skjaeveland O, Garling T, Maeland
JG. A multidimensional measure of
neighboring. Am J Community Psychol.
1996;24:413–435.
42. O’Donnell CR, Tharp RG, Wilson
K. Activity settings as the unit of analy-
sis: a theoretical basis for community in-
tervention and development. Am J Com-
munity Psychol. 1993;21:501–520.
43. Grootaert C. Social capital: the
missing link? In: Expanding the Measure
of Wealth: Indicators of Environmentally
Sustainable Development. Washington,
DC: The World Bank;1997:77–93.
44. Kawachi I. Social capital and com-
munity effects on population and indi-
vidual health. Ann N Y Acad Sci. 199 9 ;
896:120–130.
45. Spradley JP. The Ethnographic In-
terview. New York, NY: Holt, Rinehart &
Winston; 1979.
46. Weller SC, Romney AK. Structured
Interviewing. Newbury Park, Calif: Sage
Publications; 1988.
47. Morrow BH. Identifying and map-
ping community vulnerability. Disasters.
1999;23:1–18.
The Role of Community Advisory Boards: Involving
Communities in the Informed Consent Process
Ronald P. Strauss, DMD, PhD, Sohini Sengupta, PhD, MPH, Sandra Crouse Quinn, PhD, Jean Goeppinger, RN,
PhD, Cora Spaulding, MD, MPH, Susan M. Kegeles, PhD, and Greg Millett, MPH
Ethical research involving human
subjects mandates that individual
informed consent be obtained from
research participants or from sur-
rogates when participants are not
able to consent for themselves.The
existing requirements for informed
consent assume that all study par-
ticipants have personal autonomy;
fully comprehend the purpose, risks,
and benefits of the research; and
volunteer for projects that disclose
all relevant information. Yet con-
temporary examples of lapses in the
individual informed consent process
have been reported.
The authors propose the use of com-
munity advisory boards, which can fa-
cilitate research by providing advice
about the informed consent process
and the design and implementation of
research protocols. These activities
could help reduce the number of indi-
vidual informed consent lapses, bene-
fiting study participants and the scien-
tific integrity of the research in question.
(Am J Public Health. 2001;91:
1938–1943)
INDIVIDUAL INFORMED
consent has traditionally been
understood as a substantive eth-
ical requirement, an agreement
between the researcher and the
research subject concerning the
roles and obligations of each
party in a study. The researcher
seeks to enroll fully informed,
consenting, individual subjects
in a study. When informed con-
sent is not obtained, or when
subjects are not fully informed,
research abuses can occur. Com-
munity activists, joined by some
scientists, have publicized the
limitations of individual in-
formed consent and have ar-
gued for the incorporation of
community perspectives or
“voices” during informed con-
sent and throughout the re-
search process.1–4 Community
involvement has been part of in-
ternational research in develop-
ing countries for some time. Is-
sues of culture and individual
autonomy, however, must be
dealt with to create partnerships
between researchers, study par-
ticipants, and communities that
will protect participants.
Here we review examples of
situations in which the required
process of individual informed
consent failed to ensure that
study participants were fully
aware of the implications of their
involvement. In response to this
problem, we propose that indi-
vidual informed consent be aug-
mented by community advisory
boards (CABs), which can facili-
tate research by advising about
the informed consent process
and the design and implementa-
tion of a study.
BACKGROUND ON
INDIVIDUAL INFORMED
CONSENT
Since the Nuremberg Code of
19 4 7, 5several organizations
have worked to provide a set of
ethical guidelines for the con-
duct of research involving
human subjects; these guidelines
include specific references to ob-
taining informed consent. The
Council for International Organi-
zations of Medical Sciences and
the World Medical Association,
which focus on international re-
search, and the National Com-
mission for the Protection of
Human Subjects of Biomedical
and Behavioral Research, which
focuses on research conducted
nationally, are responsible for
setting and amending the guide-
lines that govern research on
human subjects.
The Council for International
Organizations of Medical Sci-
ences has formulated 15 guide-
lines, 9 of which, in its most re-
cent document, address issues
of informed consent. These is-
sues include those that may
occur in vulnerable populations
(e.g., women, the mentally chal-
lenged, minors) where individ-
ual informed consent would be
difficult, if not impossible, to
achieve.6The World Medical
Association has recently
December 2001, Vol 91, No. 12 |American Journal of Public Health Strauss et al. |Peer Reviewed |Community-Based Participatory Research |1939
COMMUNITY-BASED PARTICIPATORY RESEARCH
amended the Declaration of
Helsinki, positing 7 principles
for obtaining informed consent
that not only address consent
involving vulnerable popula-
tions but also include practical
guidance on obtaining consent
in situations where medical re-
search is combined with med-
ical care.7
Finally, the Belmont Report,8
developed by the National
Commission for the Protection
of Human Subjects of Biomed-
ical and Behavioral Research,
establishes 3 fundamental ethi-
cal principles that are relevant
to informed consent—respect for
persons, beneficence, and justice.
These principles require that
sufficient information about the
study in question (e.g., risks and
benefits) be disclosed to study
subjects, that the information
be conveyed to subjects in an
easily comprehensible manner,
and that subjects endorse state-
ments indicating that their par-
ticipation is voluntary—that is,
free of coercion and undue in-
fluence. Researchers have an
ethical and legal obligation to
ensure that these 3 elements of
informed consent are honored
when individuals agree to par-
ticipate in research.9
RESEARCH LAPSES
RELATING TO INDIVIDUAL
INFORMED CONSENT
Although informed consent
requirements were established
specifically for the purpose of
providing protection for human
subjects, these requirements
are insufficient. Recent exam-
ples exist, in both industrial
and developing countries, in
which informed consent has
failed to ensure that partici-
pants recognized that their par-
ticipation was voluntary, under-
stood the research in question
(including study terminology
and all potential benefits and
risks), and were sufficiently in-
formed to make an educated
decision regarding their partici-
pation.
The examples listed in Table
1 illustrate that the require-
ments of informed consent—vol-
untariness, full disclosure, and
comprehension—do not always
protect or sufficiently inform
human research subjects.11–27
Furthermore, over 90% of the
cases in which research abuses
have taken place are associated
with lapses in informed con-
sent.28 Indeed, in 2 studies
where research abuses were re-
ported,19 , 21 the federal Office for
Protection From Research Risks
(now the Office of Human Re-
search Protections) of the US
Department of Health and
Human Services cited the man-
ner in which research subjects
or parents of research subjects
were informed about the stud-
ies. Given that the target popula-
tions in these studies were vul-
nerable (children and poor,
HIV-seropositive Haitians),
greater efforts are necessary to
ensure that the rights of all
human subjects are protected.
We believe that protecting and
fully informing human research
subjects requires supplementing
the current methods of obtain-
ing informed consent with in-
creased involvement and advo-
cacy at the community level.
TABLE 1—Examples of Research Lapses Relating to Individual Informed Consent
Lapse Explanation Examples
Lack of voluntariness Potential coercion to influence participation Conflict of interest: Investigator is the subject’s physician10
has occurred Subjects are asked to participate when under considerable duress11–13
Subjects are asked to participate when they have few or no options (e.g., placebo-controlled surgical
trials)14–16
Incomplete disclosure Subjects are misinformed or not fully informed In a multisite breast cancer prevention trial of the drug tamoxifen, pertinent information about side
about the intent of the research in question, effects was omitted or minimized in consent forms17–18
potential risks associated with the research, In a New York study,parents were not informed that their children with attention deficit–hyperactivity
or previous pertinent research disorder were taken off their medication and subjected to brain chemistry tests 19
In a study of serodiscordant couples in Haiti, subjects were not told that the purpose of the study was
to observe couples in which 1 partner was HIV-seropositive20–21
In a zidovudine (AZT) trial in Cote d’Ivoire, 1 female subject was not told that the experimental
treatment had been proven to reduce vertical transmission of HIV in a US trial13,22–23
In a trial of isoniazid (INH) for tuberculosis in Uganda, HIV-positive subjects were not told that INH is
routinely used in the United States to prevent tuberculosis24–25
In a study conducted in Los Angeles, researchers did not properly inform parents providing consent for
their children about previously reported adverse side effects of an investigational measles vaccine26–27
Confusion about study Subjects do not fully understand the scientific Parents of critically ill babies were confused about the words random and placebo; they perceived
terminology terminology or the study’s purpose as random assignment to mean either acceptance or rejection of their babies as subjects in a UK study11
presented to them One female subject in an AZT trial in Cote d’Ivoire perceived that participating would help her child and
ease her childbirth13
HIV-positive subjects in a trial of INH for tuberculosis in Uganda were told that they would be assigned to
one of the treatment groups, with one of the groups being “treatment with a placebo drug”24–25
Subjects may not have understood that placebo-controlled surgical trials in the United States were
risk-free14–16
American Journal of Public Health |December 2001, Vol 91, No. 121940 |Community-Based Participatory Research |Peer Reviewed |Strauss et al.
COMMUNITY-BASED PARTICIPATORY RESEARCH
TABLE 2—Functions of Study Participants, Community Advisory Boards, and Investigators in the Research Process
Functions and Responsibilities
Elements Participant Community Advisory Board Investigators
Threshold elements
Competence—The capacity to understand and Is legally competent to decide Is competent to sponsor research and Are obligated to maximize participants’
reasonably decide about participants’ about research participation to act in an accountable manner to ability to make decisions; are
rights and the process of research participation represent community perceptions obligated to follow ethical guidelines
of research of informed consent; are scientifically
competent to produce and
disseminate valid research findings
Voluntariness—The exercise of free choice in making Exercises individual free choice Expresses the community’s desire to Are obligated to construct a situation that
a decision about research participation; in deciding about research participate in research; conveys to ensures voluntary participation
the absence of coercion in research participation participation participants their right to refuse
Informational elements
Disclosure—The process of making known relevant Is honest when enrolling in research Elicits from researchers information that Are obligated to fully reveal rele vant
risks, benefits, conflicts of interests, and research by revealing information needed the community needs to have; information and ramifications of
issues to those directly or indirectly affected by researchers disseminates necessary information research to institutional review
or involved in research to participants, researchers, and board,community advisory board,
community members and participants
Understanding—The ability to evaluate information and Is able to evaluate whether to give Evaluates and communicates risks and Anticipate and provide information
recommendations consent for a specific research benefits of research needed by communities and
study participants to evaluate research
Consent elements
Decision to act—The process of agreeing or disagreeing Determines whether to give consent Formulates recommendations to potential Are able to accommodate to community
with a research plan for enrollment in a specific participants, community members, and and individual concerns about the
research study researchers; includes decision to design or conduct of a specific
proceed with and monitor or to withdraw research study
support from a specific research study
Authorization—Legal sanctioning of participation in Legally and formally agrees to enroll Facilitates autonomous decision making Are obligated not to initiate research on a
a chosen research plan in a specific research study and authorization by participants subject without legal authorization
Note. Threshold, informational, and consent elements were adapted from Beauchamp and Childress.31
PROMOTING EFFECTIVE
INDIVIDUAL INFORMED
CONSENT
A Proposal to Implement
Greater CAB Involvement
The lapses of the individual
informed consent process dem-
onstrate that participants may
not be autonomous in their abil-
ity to make decisions about
research participation and that
researchers may not always re-
spect the interests of human sub-
jects while pursuing the goals of
research. Traditionally, informed
consent focuses on the relation-
ship between the researcher and
the participant. Using the princi-
ples of community consultation
and participatory research,4,29
we recommend enhancing this
process by developing a partner-
ship between researchers and
the community.
A CAB is composed of com-
munity members who share a
common identity, history, sym-
bols and language, and culture.30
For example, gay activists and
gay HIV-affected individuals
could serve on a CAB for an
AIDS clinical trials group inter-
ested in recruiting participants
from the gay community. Repre-
sentatives from the African
American community (e.g.,
young women, faith leaders)
could serve on a CAB that is
linked to a community-based
study testing a comprehensive
prenatal program for high-risk
minority pregnant women.
Using CABs to facilitate the
informed consent process fun-
damentally changes how re-
searchers relate to participants.
Table 2 illustrates how this
might work; the elements of in-
formed consent developed by
Beauchamp and Childress31 are
used as the basis for defining
the functions and responsibili-
ties of the study participants,
the CAB, and the investigators.
It is assumed that participants
have a high degree of personal
autonomy and therefore fulfill
their functions and responsibili-
ties for each of the informed
consent elements listed. Simi-
larly, investigators are expected
to fulfill their roles in protecting
and fully informing participants
by adhering to their functions
and responsibilities.
The CAB, since its members
come from the same community
as the participants, serves as a li-
aison between participants and
researchers. In this role, the CAB
can help in the development of
December 2001, Vol 91, No. 12 |American Journal of Public Health Strauss et al. |Peer Reviewed |Community-Based Participatory Research |1941
COMMUNITY-BASED PARTICIPATORY RESEARCH
materials that explain the study
to participants and can represent
the participants’ concerns to the
researchers. The CAB can act as
an advocate for the rights of
human subjects, for example, by
conveying to participants their
right to refuse or their right to
full disclosure of information
about the benefits and risks of
the study and about previous rel-
evant research. Finally, the CAB
can provide a set of recommen-
dations to help potential partici-
pants decide whether or not to
participate in a study.
Practical Examples of CABs
in the Research Process
This section highlights some of
the ways in which CABs can be
implemented in research involv-
ing human subjects. These exam-
ples come from AIDS research,
because the history and experi-
ence of using CABs in AIDS-
related research have been de-
scribed previously.32–40 CAB
involvement can, however, be ex-
tended to research on other dis-
eases that disproportionately af-
fect communities of color or
communities that share a specific
identity. These examples also are
predominantly from clinical trials
research, but CAB involvement
can be applied to community-
based prevention research (e.g.,
testing a behavioral intervention)
as well.
Formalizing community in-
volvement in research through
the use of CABs may greatly im-
prove the informed consent pro-
cess, study design, and study im-
plementation at different levels
of the research. CAB participa-
tion has the potential for affect-
ing clinical trials of experimental
therapies, particularly those tar-
geting vulnerable populations.
Some US federal and state fund-
ing agencies have responded to
the call for greater community
involvement in research by re-
quiring scientists to incorporate
CABs into their research proto-
cols, particularly in randomized
placebo-controlled clinical trials
of experimental therapies and
vaccines in HIV/AIDS research.
By 1990, the National Insti-
tute of Allergy and Infectious
Diseases (NIAID) had formally
integrated community represen-
tatives into the AIDS Clinical
Trials Group (ACTG), the Center
for AIDS Research, and the
Community Programs for Clini-
cal Research on AIDS to involve
community members who had
raised concerns about the con-
duct of AIDS clinical trials.32
Currently, each of these NIAID-
sponsored programs is expected
to have a local CAB, with one
member of each CAB serving on
a national-level advisory board
called a Community Con-
stituency Group.
Local CABs can be influential
in halting the progress of clinical
trials, as shown in the following
example. A CAB helped prevent
2 ACTG study protocols from
being initiated at the San Fran-
cisco, Calif, site, even though
both protocols were up and run-
ning at the national level. Re-
garding ACTG 320, which had
two arms—AZT/3TC/placebo
and AZT/3TC/Crixivan—the San
Francisco CAB felt that there
were enough data to substantiate
the benefits of Crixivan in reduc-
ing viral load, and thus having a
placebo arm was considered un-
ethical. In ACTG 343, partici-
pants were randomized to either
a 3-drug, 2-drug, or 1-drug regi-
men after having been on suc-
cessful antiretroviral therapy for
6 months. The San Francisco
CAB felt that randomizing pa-
tients to receive less than the
standard of care unnecessarily
exposed participants to risk. The
study was closed prematurely by
an interim review committee,
which determined that the risk of
virologic rebound was clearly
weighted in the 1- and 2-drug
arms. This decision convinced
the principal investigator not to
implement the protocol at the
San Francisco site.
The HIV Network for Preven-
tion Trials (HIVNET) was estab-
lished in 1993 to conduct domes-
tic and international multicenter
trials, with a primary focus on
conducting phase I and II clinical
trials of HIV vaccines.33 In the
following examples, HIVNET
CABs played a role in advocating
compensation for trial-related in-
juries and full disclosure of infor-
mation explaining the benefits
and risks associated with trial
participation.
• The national HIVNET CAB
convinced both NIAID and 2
pharmaceutical sponsors to guar-
antee compensation for medical
costs incurred by participants in
the event of physiological harm
caused by the candidate preven-
tive HIV vaccine tested that year
in a phase II trial.34 Without
CAB input, this issue might have
been overlooked by the vaccine
trial researchers.
• The national HIVNET CAB
was instrumental in creating a
participants’ bill of rights despite
objections from local principal
investigators, who believed that
the bill of rights simply restated
the consent form. The national
CAB members thought other-
wise, recognizing that individuals
need to understand their rights
as trial volunteers, given the list
of social harms associated with
participation, and that such a
document would be an impor-
tant tool for communication in
their respective communities.
• The local San Francisco
HIVNET CAB wanted to ensure
that individuals being enrolled in
the commercially sponsored
phase III preventive HIV vaccine
trial were provided with suffi-
cient information to make a fully
educated decision about partici-
pation. In particular, CAB mem-
bers were concerned that poten-
tial participants might not fully
comprehend the content of the
consent forms. Thus, the in-
formed consent process was
lengthened into several visits so
that these individuals would
have time to ask questions and
digest the information given to
them before making a decision
to participate.
The HIV Cost and Services
Utilization Study (HCSUS) and
the CDC/NIAID-funded Project
LinCS (Linking Communities
and Scientists) showed that CAB
participation has the advantage
of forging a true partnership
with scientists from the studies’
inception.
• HCSUS created a 12-mem-
ber national CAB that func-
tioned as a conduit for ensuring
participation of HIV-seropositive
individuals and their advocates
in the planning and implementa-
tion phases of clinical trial re-
search.35–36 Among its activities,
the HCSUS CAB contributed by
identifying research priorities, in-
cluding a greater emphasis on
women-specific issues, and areas
of research inquiry that had not
been proposed by the research-
ers before. This CAB was also
helpful in the day-to-day opera-
tions of the study, for example,
by reviewing informed consent
forms for content and compre-
hensibility.
• Project LinCS used CABs to
assist in examining community
American Journal of Public Health |December 2001, Vol 91, No. 121942 |Community-Based Participatory Research |Peer Reviewed |Strauss et al.
COMMUNITY-BASED PARTICIPATORY RESEARCH
perceptions about HIV vaccine
efficacy trials.37 Three sites (San
Francisco, Calif; Philadelphia, Pa;
and Durham, NC) formed and
worked with local CABs, and
these CABs contributed to differ-
ent aspects of the research, in-
cluding problem identification,
participant recruitment, research
monitoring (including retention
and follow-up), and dissemina-
tion of study findings.38 Had
CABs not been used, the ability
of Project LinCS to recruit study
participants, as well as the qual-
ity of the interview data col-
lected, would have been greatly
affected. Furthermore, 2 re-
sources have been developed
with assistance from Project
LinCS CABs. First, a video was
developed that discusses the 3
communities’ perspectives on
participating in phase III preven-
tive HIV vaccine trials.39 Second,
the Durham CAB assisted in the
development of a brochure that
provides a list of questions for
potential study participants to
ask researchers before deciding
whether or not to participate in
any given study.40
CRITICISMS OF CABS
All research involving human
subjects, particularly clinical and
behavioral studies, could benefit
by having CABs or equivalents to
provide advice about informed
consent protocols, subject enroll-
ment, research design, and imple-
mentation. Yet the use of CABs
has not always been seen as con-
ducive to the research process.
For example, CABs in clinical
trial research are often viewed by
researchers as auxiliary, or as
“window-dressing.”1Indeed, it is
likely that the dynamic between
the principal investigator and the
CAB may dictate the extent to
which a CAB can influence and
guide research. A principal inves-
tigator who is willing to listen to
the concerns of the CAB and to
obtain feedback from its mem-
bers may be a requirement for
an effective CAB.
Second, the resources allo-
cated to the development and
management of CABs tend to be
limited and are often the first to
be cut from study budgets when
research priorities are consid-
ered. Indeed, in the first phase III
trial of a candidate HIV vaccine,
the private financial sponsor did
not provide funding for CAB de-
velopment at its 50 North Amer-
ican trial sites, and a national
CAB had not been assembled
when the study began.1
Finally, greater CAB imple-
mentation is needed in develop-
ing countries, particularly in clini-
cal studies, where there is more
at stake in terms of potential risks
and social harms. Community in-
volvement sometimes means hav-
ing trusted local leaders or even
family members act as liaisons
between scientists and study par-
ticipants.2,41–42 This mechanism,
however, has its limitations; re-
placing the autonomy of the indi-
vidual with the judgment of a
community leader or family
member may not be in the best
interests of prospective research
participants. On the other hand,
if developing countries could
adopt CABs as a component of
clinical research, individual in-
formed consent failures, such as
confusion over study terminology
(e.g., what it means to receive a
placebo) and participants’ not
being fully informed, could be
avoided or at least minimized.
CONCLUSION
In most situations, investiga-
tors and potential research sub-
jects expect that the decision
about research enrollment and
the authorization of research will
be an individual choice. Yet com-
munity perceptions of research
and of a specific research project
may guide individual action.
Having a CAB provides a context
for researchers and community
members to discuss the intent,
risks, benefits, and implications
of research projects in culturally
sensitive terms.
In spite of the increasing use
of CABs, there has been only
limited investigation into their
impact on the design and imple-
mentation of research, particu-
larly AIDS research, where their
use is most prevalent. Some at-
tention has been given to exam-
ining how CABs can enhance re-
cruitment and participation in
AIDS clinical trials.32 No studies,
however, have systematically
evaluated the lessons learned
from using CABs and their im-
pact on effecting change in the
way in which research is con-
ducted. Indeed, one of the criti-
cisms of CAB participation in
the research process has to do
with not having enough infor-
mation about the structure of a
CAB and how it works to appre-
ciate and evaluate its ability to
guide, speak for, and protect its
community.43
We recognize this as a limita-
tion. We call for a greater effort
to devise methods of training in-
vestigators in the development
and maintenance of CABs and in
the selection of community advi-
sors who will see that the inter-
ests of the target community, as
well as the research priorities of
the investigators, are considered.
In a climate where formal re-
search safeguards do not always
succeed in protecting the rights of
human subjects, the need for
community-based methods to
augment the process of protec-
tion is apparent. CABs reinforce
the importance of community in-
volvement in the decision-making
process from the inception of a
research study, to ensure that
consenting human subjects are
fully informed about the study in
question. We hope that the exam-
ples of CAB participation pre-
sented here have demonstrated
the crucial role communities can
play in the ethical conduct of re-
search and how community input
may enhance, not detract from,
the research process.
About the Authors
Ronald P. Strauss is with the Department
of Dental Ecology, School of Dentistry; the
Department of Social Medicine, School of
Medicine; and the Center for AIDS Re-
search, University of North Carolina at
Chapel Hill. At the time of the study, So-
hini Sengupta was, and Susan M. Kegeles
is, with the Center for AIDS Prevention
Studies, University of California, San
Francisco. Sandra Crouse Quinn is with
the Department of Health Services Admin-
istration, University of Pittsburgh, Pitts-
burgh, Pa. Jean Goeppinger is with the
Schools of Nursing and Public Health,
University of North Carolina at Chapel
Hill. Cora Spaulding is with the Depart-
ment of Family Medicine, School of Medi-
cine, University of North Carolina at
Chapel Hill. Greg Millett is with the De-
partment of Health Education, University
of Alabama in Birmingham.
Requests for reprints should be sent to
Ronald P. Strauss, DMD, PhD, School of
Dentistry, University of North Carolina at
Chapel Hill, CB #7450, Chapel Hill, NC
27599-7450 (e-mail: ron_strauss@
unc.edu).
This commentary was accepted Janu-
ary 23, 2001.
Contributors
R.P. Strauss and S. Sengupta planned
and led the writing of this commentary,
using the input, ideas, and revisions of-
fered by the other authors. S. Sengupta
examined the history of ethical lapses in
research. S.C. Quinn and J. Goeppinger
reviewed the literature and examined
the theoretical aspects of informed con-
sent and participatory research. C.
Spaulding, S.M. Kegeles, G. Millett, and
R.P. Strauss used their experiences in
working with community advisory
boards to provide historical and practi-
cal examples of how communities have
been involved in research.
December 2001, Vol 91, No. 12 |American Journal of Public Health Strauss et al. |Peer Reviewed |Community-Based Participatory Research |1943
COMMUNITY-BASED PARTICIPATORY RESEARCH
Acknowledgments
This work was supported in part by
UNC-C H, Center for AIDS Research, a
program funded by the National Institute
of Child Health and Human Develop-
ment (P30-HD37260); the Centers for
Disease Control and Prevention, cooper-
ative agreement U48/CCU409660; and
grant T32 MH19105 from the National
Institutes of Mental Health.
The authors would like to thank
Cathy Emrick, MPH, for her assistance.
References
1. Eight Years and Counting: What
Will Speed Development of an AIDS Vac-
cine. Washington, DC: AIDS Vaccine
Advocacy Coalition; 1999.
2. Barry M. Ethical considerations of
human investigation in developing
countries—the AIDS dilemma. N Engl J
Med. 1988;319:1083–1086.
3. Levine R. Ethics and Regulation of
Clinical Research. Baltimore, Md: Urban
& Schwarzenberg; 1986.
4. Melton G, Levine R, Koocher G,
Rosenthal R, Thompson W. Community
consultation in socially sensitive re-
search: lessons from clinical trials of
treatments for AIDS. Am Psychol. 19 8 8 ;
43:573–581.
5. The Medical Case Trial, Trials of
War Criminals Before the Nuremberg Mil-
itary Tribunals Under Control Council
Law No. 10. Nuremberg, October 1946–
April 1949. Washington, DC: US Gov-
ernment Printing Office; 1949–1953.
National Archives Record Group 238,
M887.
6. Ethics and Research on Human Sub-
jects: International Guidelines. Geneva,
Switzerland: Council for International
Organizations of Medical Sciences;
1993.
7. World Medical Association. Decla-
ration of Helsinki: Ethical Principles for
Medical Research Involving Human Sub-
jects. Adopted by the 18th WMA Gen-
eral Assembly, Helsinki, Finland, June
1964; amended by the 52nd WMA
General Assembly, Edinburgh, Scotland,
October 2000.
8. The Belmont Report: Ethical Princi-
ples and Guidelines for the Protection of
Human Subjects of Research. Washington,
DC: National Commission for the Pro-
tection of Human Subjects of Biomed-
ical and Behavioral Research; 1979.
Available at: http://ohsr.od.nih.gov/
mpa/belmont.php3. Accessed October
4, 2001.
9. Edgar H, Rothman DJ. The institu-
tional review board and beyond: future
challenges to the ethics of human ex-
perimentation. Milbank Q. 1995;73:
489–506.
10. Karim QA, Karim SSA, Coovadia
HM, Susser M. Informed consent for
HIV testing in a South African hospital:
is it truly informed and truly voluntary?
Am J Public Health. 1998;88:637–640.
11. Snowdon C, Garcia J, Elbourne D.
Making sense of randomization: re-
sponses of parents of critically ill babies
to random allocation of treatment in a
clinical trial. Soc Sci Med. 1997;45:
1337–1355.
12. Msellati P, Ramon R, Viho I, et al.
Prevention of mother-to-child transmis-
sion of HIV in Africa: uptake of preg-
nant women in a clinical trial in Abi-
djan, Cote d’Ivoire. AIDS. 1998;12:
1257–1258.
13. AIDS research in Africa: juggling
risks and hopes. New York Times. Octo-
ber 9, 1997:A1, A8.
14. Macklin R. The ethical problems
with sham surgery in clinical research.
N Engl J Med. 1999;341:992–996.
15. Real knife, fake surgery. Time. Feb-
ruary 22, 1999:66.
16. Thomas JR. Placebo surgery [edito-
rial]. Mo Med. 1999;96(2):41.
17. McKeon VA. The Breast Cancer
Prevention Trial: evaluating tamoxifen’s
efficacy in preventing breast cancer.
J Obstet Gynecol Neonatal Nurs. 19 97 ;
26:79–90.
18. House committee alleges irregular-
ities in Tamoxifen trial informed con-
sent forms. Cancer Letter. 1992:
18(42):1–3.
19. NY research centers faulted in
child study: patient protection is found
lacking. Washington Post. June 12,
1999:A02.
20. Deschamps MM, Johnson WD Jr,
Pape JW. Feasibility and cohort develop-
ment for HIV vaccine trials in Haiti.
AIDS Res Hum Retroviruses. 1994;
10(suppl 2):S231–S233.
21. For subjects in Haiti study, free
AIDS care has a price. New York Times.
June 6, 1999:1A, 20A.
22. Lurie P, Wolfe SM. Unethical trials
of interventions to reduce perinatal
transmission of the human immunodefi-
ciency virus in developing countries.
N Engl J Med. 1997;337:853–856.
23. Connor EM, Sperling RS, Gelber
R, et al. Reduction of maternal–infant
transmission of human immunodefi-
ciency virus type 1 with zidovudine
treatment. N Engl J Med. 1994;331:
1173–1180.
24. Whalen CC, Johnson JL, Okwera
A, et al. A trial of three regimens to
prevent tuberculosis in Ugandan adults
infected with the human immunodefi-
ciency virus. N Engl J Med. 1997;337:
801–808.
25. US medical researchers flout rules
around the world. Cleveland Plain
Dealer. November 8, 1998:1A, 12A.
26. Markowitz LE, Bernier RH. Immu-
nization of young infants with Edmon-
ston-Zagreb measles vaccine. Pediatr In-
fect Dis J. 1987;6:809–812.
27. Measles, government, and trust: ir-
regularities like those of 1989–91 LA
study should never recur. Los Angeles
Times. June 20, 1996:Metro section.
28. Youth’s death shaking up field of
gene experiments on humans. New York
Times. January 27, 2000:1A, 20A.
29. Study of Participatory Research in
Health Promotion: Review and Recom-
mendations for the Development of Partic-
ipatory Research in Health Promotion in
Canada. Vancouver, British Columbia:
Institute of Health Promotion Research,
University of British Columbia; 1995.
30. Israel B, Checkoway B, Schulz A,
Zimmerman M. Health education and
community empowerment: conceptual-
izing and measuring perceptions of indi-
vidual, organizational and community
control. Health Educ Q. 1994;21:
149–170.
31. Beauchamp T, Childress J. Princi-
ples of Biomedical Ethics. 4th ed. New
York, NY: Oxford University Press;
1994.
32. Cox LE, Rouff JR, Svendsen KH,
Markowitz M, Abrams DI, Beirn T.
Community programs for clinical re-
search on AIDS. Community advisory
boards: their role in AIDS clinical trials.
Health Soc Work. 1998;23:290–297.
33. National Institute of Allergy and
Infectious Diseases. Overview of the
HIVNET. Available at: http://www.
niaid.nih.gov/daids/adulttrials/hivnet1.
htm. Accessed October 4, 2001.
34. Nine Years and Counting: What
Will Speed Development of an AIDS Vac-
cine. Washington, DC: AIDS Vaccine
Advocacy Coalition; 1998.
35. Senterfitt JW. Collaboration with
constituent communities in the HIV
Cost and Services Utilization Study
(HCSU S). AHS R & FHSR Annual Meet-
ing Abstract Book. 1996;13:22–23.
Also available at: http://www.ahsr.org/
annual/annual_1996/3_cc/senterfitt.
htm. Accessed October 4, 2001.
36. Senterfitt W, Lucey M, Eggan F, et
al. Collaboration between health ser-
vices researchers and their target popu-
lation: the HCSUS model. In: Program
and abstracts of the XI International
conference on AIDS; July 7–12; Van-
couver, British Columbia. Abstract
Mo.D.1860.
37. Blanchard L. Community assess-
ment and perceptions: preparation for
HIV vaccine efficacy trials. In: King
NMP, Henderson GE, Stein J, eds. Be-
yond Regulations: Ethics in Human Sub-
jects Research. Chapel Hill, NC: Univer-
sity of North Carolina Press; 1999:
85–93.
38. Strauss RP. Community advisory
board–investigator relationship in com-
munity-based research. In: King NMP,
Henderson GE, Stein J, eds. Beyond Reg-
ulations: Ethics in Human Subjects Re-
search. Chapel Hill, NC: University of
North Carolina Press; 1999:94–101.
39. University of Pennsylvania Center
for Studies of Addiction. We All Have
Our Reasons: Community Perceptions of
HIV Vaccine Research. Rockville, Md:
CDC National Prevention Information
Network; 1997.
40. Taking Part in Research Studies:
What Questions Should You Ask? Rock-
ville, Md: CDC National Prevention In-
formation Network; 1998.
41. Leach A, Hilton S, Greenwood
BM, et al. An evaluation of the in-
formed consent procedure used during
a trial of Haemophilus influenzae type B
conjugate vaccine undertaken in The
Gambia, West Africa. Soc Sci Med.
1999;48:139–148.
42. Preziosi MP, Yam A, Ndiaye M, et
al. Practical experiences in obtaining in-
formed consent for a vaccine trial in
rural Africa. N Engl J Med. 19 97 ; 3 3 6 :
370–373.
43. Wailoo KA. Research partnerships
and people “at risk”: HIV vaccine effi-
cacy trials and African American com-
munities. In: King NMP, Henderson GE,
Stein J, eds. Beyond Regulations: Ethics
in Human Subjects Research. Chapel Hill,
NC: University of North Carolina Press;
1999:102–107.