What Is Community? An Evidence-Based Definition For Participatory Public Health

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What Is Community? An Evidence-Based Deﬁnition for Participatory Public

Health
Article in American Journal of Public Health · January 2002

DOI: 10.2105/AJPH.91.12.1929 · Source: PubMed
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 COMMUNITY-BASED PARTICIPATORY RESEARCH 
Can Public Health Researchers and Agencies

Reconcile the Push From Funding Bodies
and the Pull From Communities?
Responding to growing impa- Lawrence W. Green, DrPH, and Shawna L. Mercer, PhD
tience with the limited application of
research findings to health practices
and policies, both funding bodies FOR MANY YEARS, MUCH HAS an alterna-
and communities are demanding been made of the need to make tive to top-down
better use of research, apply re- technical assistance from ex-
that research show greater sensitiv-
search results more assiduously, perts to practitioners or com-
ity to communities’ perceptions,
disseminate research findings munity residents that may help exam-
needs, and unique circumstances.
more effectively, and synthesize to ensure that research results ple, after
One way to assure this is to employ research into evidence-based address real needs and will actu- decades of serving as subjects
participatory research—to engage guidelines and “best practices” ally be used.3 for anthropologic and epidemio-
communities at least in formulating for more immediate application logic studies, behavioral sur-
research questions and interpreting by practitioners. Recently, it has THE CONVERGENCE OF veys, and health education pro-
and applying research findings and become increasingly clear that RESEARCH AND gram evaluations, have put the
possibly also in selecting methods there is a need to increase the PARTICIPATION brakes on external researchers’
and analyzing data. public’s science and health liter- exploiting their circumstances
"Community" should be inter- acy, so that people will consume Participatory research has a while providing very little bene-
preted broadly as all who will be af- research more intelligently and rich and honored tradition in fit to their communities. Simi-
school-aged children will be able community development, espe- larly, African Americans living
fected by the research results, in-
to integrate scientific methods cially in developing countries, in inner cities have noticed that
cluding lay residents of a local area,
and facts more fully into their ed- where it has enabled social their lives have been described
practitioners, service agencies, and
ucational experience.1,2 change and community develop- publicly by researchers in un-
policymakers. Participatory research Many of these appeals have a ment projects among populations flattering—if sympathetic—ways,
should not be required of every proj- patronizing tone to them, which who were suspicious of the mo- but they have seen little come
ect, but when results are to be used suggests that the researcher is in tives of Western researchers.4 of it besides embarrassment and
for, in, and by communities, those the best position to decide what Much of the renaissance of par- shame.
communities should collaborate not practitioners and the public need ticipatory research since the The recognition by these and
only in applying findings but also in and then give it to them. The ap- 1960s has taken place in social, other communities that they
determining the ways in which the peal for increased science liter- educational, and health services needed new information about
findings are produced and inter- acy at least acknowledges a role development and delivery, some their circumstances that only
preted. (Am J Public Health. 2001; for the public in the interpreta- in public health. In health ser- original research could render
tion of science, but even here vices, nursing has led the way, converged with a growing recog-
91:1926–1929)
the assumption is that science with collaborative studies be- nition by academic and other
will be delivered and consumed. tween academic nurses and nurs- public health researchers that
Yet the field of public health ing administrators and staff they could no longer get the data
yields ample evidence that dis- aimed at improving nursing roles they needed without more active
seminating the results of studies and difficult working conditions cooperation of the communities.
and telling people how they that have resulted from changes This convergence led to a re-
should incorporate this informa- in health care systems.5 striking of the power balance be-
tion into their lives produces In public health, the revival tween the observers and the ob-
minimal behavior change. In of participatory research (also served. Research subjects became
contrast, participatory research— referred to as participatory ac- more than research objects. They
research that is generated collab- tion research) has been most gave more than informed con-
oratively in a partnership be- notable in minority health.6–8 sent; they gave their knowledge
tween scientists and others—has Native American and Canadian and experience to the formula-
reemerged in recent decades as First Nations communities, for tion of research questions and
1926 | Community-Based Participatory Research | Peer Reviewed | Green and Mercer American Journal of Public Health | December 2001, Vol 91, No. 12
methods to be applied in their engages the lay community. Typi- mining whether research is par- mining the complexity of the re-
communities. They became more cally, “community” is understood ticipatory? Maximum participa- search methods and analyses.
than the victims described in as a local geopolitical entity, as in tion occurs when stakeholders re- Typically, there is no need (and
studies of their health problems the term “community-based par- main active partners throughout no justification) to drag volunteer
and living conditions; they be- ticipatory research.” If, however, the study—in the formulation of participants through a highly
came active partners in identify- the notion of community in- research questions, selection of technical and labor-intensive re-
ing key problems and in using cludes other groupings of people methods, and analysis, interpreta- search process as long as they
the research findings to advocate sharing common characteristics tion, and application of findings. have the opportunity to help
policies and programs and in pro- or interests, or if the purpose Minimally, stakeholders should shape the research questions and
gram development, monitoring, under consideration is something be involved at least at the front interpret the findings. Figure 2 il-
and evaluation. other than community develop- end of the study, in formulating lustrates the varying levels of
ment, there emerge both the research questions, and at the participation by different actors
WHOSE PARTICIPATION, need and the opportunity for un- back end, in interpreting and ap- and stakeholders in different
IN WHAT RESEARCH? dertaking participatory research plying the findings. This demarca- types of research and community
with groups other than commu- tion of the range of participatory development.
The origins of participatory nity residents. research clarifies the distinction
research sketched above might We therefore urge a broader between participatory research CURRENT USES OF
give the impression that it is a application of participatory re- and basic research, which typi- PARTICIPATORY
research method designed solely search, one in which participatory cally involves only researchers, RESEARCH AND THE
for researcher–public interac- research is seen as systematic in- and action research, which neces- VALUE OF EXTENDING ITS
tion. On the contrary, it is not a quiry, with the collaboration of sarily includes those involved in PURVIEW
research method, nor is it limited those affected by the issue being the action situation (usually prac-
to the direct relationship be- studied, for the purposes of edu- titioners) as subjects of, rather The happy confluence of mu-
tween academic researchers and cation and taking action or effect- than as participants, in the re- tual interests and action that can
the public. Participatory research ing social change.9 With this more search. The types of research and be achieved through participa-
is an approach that entails in- generic definition, “participants” various stakeholders are shown tory research remains the excep-
volving all potential users of the can be public health practitioners in Figure 1. tion rather than the rule. Indeed,
research and other stakeholders and agencies as well as their con- How does one determine the Congress funded the Prevention
in the formulation as well as the stituents and clients or commu- extent to which participatory re- Research Centers (PRCs) pro-
application of the research. A nity residents. search should be incorporated gram of the Centers for Disease
wide range of research meth- What are the upper and lower into a given research project? Control and Prevention (CDC) to
ods—epidemiologic, experimen- bounds of participation for deter- One rule of thumb lies in deter- develop innovative ways to con-
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 FIGURE 1—Levels of participation and collaboration of different groups in participatory research (PR).
participatory research necessarily
December 2001, Vol 91, No. 12 | American Journal of Public Health Green and Mercer | Peer Reviewed | Community-Based Participatory Research | 1927
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.
Source. Green et al.9
FIGURE 2—Degree of participation by different stakeholders, by type of research or community action.

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
duct research and demonstration How can participatory re- into best practices comes from Disease Control and Prevention, Atlanta,
activities that would result in im- search contribute to better use of carefully controlled trials con- Ga. Shawna L. Mercer is also a postdoc-
proved public health practice. Yet science, more assiduous applica- ducted in other places—that is, toral fellow of the Canadian Institutes for
Health Research and the Canadian
a 1996 Institute of Medicine tion of research results, more ex- not locally—under the direction Health Services Research Foundation.
panel reviewing the PRCs con- tensive dissemination of research and with the resources of “for- Requests for reprints should be sent to
cluded that the partnership be- findings, and synthesis of evi- eign” scientific groups. Lawrence W. Green, DrPH, Office of Ex-
tramural Prevention Research, Public
tween universities, public health dence-based guidelines and “best Local practitioners and policy- Health Practice Program Office, CDC,
agencies, and communities was practices” from previous research makers have every reason to sus- 4770 Buford Hwy NE, Mail Stop K-56,
falling short of legislative intent.10 for more immediate application pect that their circumstances are Atlanta, GA 30341-3724 (e-mail:
lgreen@cdc.gov).
David McQueen, Patricia by practitioners? First, we en- different from those represented This commentary was accepted Sep-
Riley, Marshall Kreuter, and courage the expansion of partici- in the studies that went into for- tember 18, 2001.
Lynda Doll, former national Di- patory research, both in the mulating best practices.14 Partici- Note. The views expressed in this com-
mentary do not necessarily represent the
rectors and supervisors of the number of studies undertaken patory research offers them an views or policy of the CDC.
PRCs program, have led the ef- and in application of a broader opportunity to examine their
fort to ensure genuine commu- definition of participatory re- own circumstances, to pilot-test Contributors
nity input into all 26 PRCs as search to involve other stake- the best practices within their Both authors contributed to the concep-
well as at the national level.11,12 holders—including practitioners, own context, and to adapt these tion, writing, and editing of this paper.
In this issue of the Journal, Dr. other service providers, public practices to their own needs.
Kenneth Olden, the Director of health departments, and policy- Such local adaptations, in turn, References
1. Nutbeam D. Health literacy as a
the National Institute of Envi- makers—in addition to lay com- provide valuable feedback to the public health goal: a challenge for
ronmental Health Sciences munity members. research community as it seeks contemporary health education and
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century. Health Prom Int. 2000;15;
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2. Ratzan SC. Health literacy: commu-
sponding to this demand.13 subject to suspicion from local lic health and as it seeks to ex- nication for the public good. Health
Thus, certain funding bodies are public health departments, practi- plore, account for, and overcome Prom Int. 2001;16;209–214.
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What Is Community? An Evidence-Based Definition

for Participatory Public Health
Increased emphasis on community collaboration indicates the need for con- Kathleen M. MacQueen, PhD, MPH, Eleanor McLellan, MA, David S.
Metzger, PhD, Susan Kegeles, PhD, Ronald P. Strauss, PhD, Roseanne
sensus regarding the definition of community within public health.This study ex-
Scotti, MA, Lynn Blanchard, PhD, and Robert T. Trotter II, PhD
amined whether members of diverse US communities described community in
similar ways.
To identify strategies to support community collaboration in HIV vaccine tri- lack of an accepted definition of was undertaken to identify effec-
als, qualitative interviews were conducted with 25 African Americans in Dur- community can result in different tive strategies for meeting these
ham, NC; 26 gay men in San Francisco, Calif; 25 injection drug users in Phila- collaborators forming contradic- challenges. HIV vaccine efficacy
delphia, Pa; and 42 HIV vaccine researchers across the United States.Verbatim tory or incompatible assumptions trials and, ultimately, immuniza-
responses to the question “What does the word community mean to you?” were about community and can under- tion programs require national
analyzed. Cluster analysis was used to identify similarities in the way commu- mine our ability to evaluate the coordination across diverse com-
contribution of community col- munities. The primary Project
nity was described.
laborations to achievement of LinCS research objective cen-
A common definition of community emerged as a group of people with diverse
public health objectives.9,16 We tered on identifying ways to
characteristics who are linked by social ties, share common perspectives, and
are more likely to validate the ef- make efforts such as large-scale
engage in joint action in geographical locations or settings.The participants dif- fectiveness, or ineffectiveness, of efficacy trials and immunization
fered in the emphasis they placed on particular elements of the definition. Com- collaborative models if we can programs as participatory as pos-
munity was defined similarly but experienced differently by people with diverse identify core dimensions of com- sible. A related objective was to
backgrounds.These results parallel similar social science findings and confirm munity that have external valid- demonstrate the value added to
the viability of a common definition for participatory public health. (Am J Pub- ity across communities, are con- research when community mem-
lic Health. 2001;91:1929–1938) sistent with measures that have bers actively participate in the
internal validity within diverse design, implementation, and in-
PUBLIC HEALTH PROGRAMS strategy for successful public communities, and have predictive terpretation of the research.
and policy are often defined at health research and programs.2–9 value for community-level health For this commentary, we ana-
regional and national levels, but Reviews of the effectiveness of outcomes. lyzed data from 1 component of
community is, literally, where collaborations for improving Efforts to develop and test Project LinCS that asked people
prevention and intervention take community health indicate that HIV vaccines have highlighted how they defined community.
place. Community context has they can be effective9–11 but that social challenges that make com- The interviews were conducted
been identified as an important there are many potential obsta- munity support, trust, and in- with diverse groups, thus allow-
determinant of health outcomes.1 cles to realizing the benefits of a volvement critical for the long- ing us to look at the potential ef-
Recognition of these facts has led participatory approach in both term success of preventive HIV fect of local and historic experi-
to increased calls for community public health research and pro- vaccines.17 Project LinCS (Link- ence on the way people defined
collaboration as an important grams.8,11–15 In particular, the ing Communities and Scientists) community and to determine
December 2001, Vol 91, No. 12 | American Journal of Public Health MacQueen et al. | Peer Reviewed | Community-Based Participatory Research | 1929
whether a single definition of extracted for analysis: “The word persons within each participant tified 4 clusters among the
community could effectively en- ‘community’ means different group. From the matrices, com- themes. A core cluster contained
compass the diversity of local things to different people. What plete-link Johnson’s hierarchical 5 elements: locus, sharing, joint
experience. does the word community mean clusters were generated in action, social ties, and diversity.
to you? What is a community?” ANTHROPAC21 to identify core Each core element reflected some
METHODS elements used to define commu- aspect of face-to-face interaction.
Data Analysis nity. The cluster analysis helped A second cluster centered on
Data Collection The analysis team developed a identify similarities in the way group-based elements of commu-
Project LinCS participants in- structured codebook through a people defined community and nity: divisiveness, leverage, plural-
cluded African Americans in standardized iterative process.18 the extent to which those simi- ism, and responsibility. These ele-
Durham, NC; gay men in San The extracted text was read and, larities cut across participant ments reflected social cohesion
Francisco, Calif; injection drug on the basis of the text content, a groups. and community involvement and
users (IDUs) in Philadelphia, Pa; set of initial codes and definitions often acted as boundary-setting
and HIV vaccine researchers in was proposed. None of the codes RESULTS or -maintaining mechanisms.
locations across the United were specified before the text was Each element of these 2 clusters
States. The 3 local research read. Two people then indepen- The 4 participant groups var- was cited by at least 4 members
communities were selected dently coded randomly selected ied in terms of a number of so- of each participant group.
through a competitive funding text segments from each partici- ciodemographic characteristics The third and fourth clusters
process. Through a study design pant group and compared results. beyond those immediately reflec- centered on elements that re-
collaboratively developed by re- Coding discrepancies were dis- tive of the intentional targeted flected stresses experienced by
searchers and local community cussed with the analysis team sampling. Participants who were communities or their members.
advisory boards convened for and the codebook was revised ac- scientists or from San Francisco The first stress cluster included
the project, a total of 76 face-to- cordingly. This process was re- tended to have higher levels of the elements of criminality and
face, in-depth, open-ended inter- peated until the coders reached a education and higher incomes drug use. The second centered on
views were conducted in Phila- satisfactory level of agreement. than participants in Philadelphia the elements of AIDS and unity.
delphia, Durham, and San To minimize the possibility and Durham. None of the scien-
Francisco to identify broad is- that relevant text was missed, all tists and only 1 of the Philadel- Core Elements of Community
sues, including how people de- text was double-coded. Inter- phia participants lacked health Each of the 5 core elements—
fined community. The interviews coder agreement for text associ- insurance, although they differed locus, sharing, joint action, social
were conducted between De- ated with each participant group in terms of the primary source of ties, and diversity—was cited by
cember 1995 and May 1996. was then assessed for each code insurance (employer based for 20% or more of respondents
Another 42 in-depth interviews by κ scores.19 For each code with scientists and government based (Table 1). Locus was included in
were conducted between Sep- a κ of less than 0.8, discrepan- for IDUs). Approximately one 77% and sharing was included
tember 1997 and September cies in coding were reviewed by third of San Francisco and Dur- in 58% of all definitions. Both
1998 via telephone with HIV this commentary’s first author, ham participants lacked health locus and sharing were included
vaccine researchers across the who then decided whether to insurance. The mean number of in 42% of responses, and at least
United States; these interviews apply the code to the text in years lived in the current neigh- 1 of the 2 was included in 93%
included a parallel question on question. For codes with a κ of borhood of residence was longest of them. Locus and sharing were
defining community. Study pro- 0.8 or greater, discrepancies for IDUs in Philadelphia (16.5 each cited alone (i.e., without dis-
tocols and interview guides were were reviewed by the 2 coders, years), followed by scientists cussion of other core elements)
approved by local and Centers who then decided which code (7.2), African Americans in Dur- in 16% of responses. Neither
for Disease Control and Preven- applications to retain. Text coding ham (5.7), and gay men in San joint action nor diversity was dis-
tion institutional review boards; and intercoder agreement assess- Francisco (2.6). cussed alone, and social ties were
written informed consent was ments were done with a develop- Of the 118 participants inter- discussed alone by 2 people
obtained from all participants mental version of the software viewed, 113 provided definitions (2%). Sharing and locus were dis-
(the vaccine researchers mailed program AnSWR.20 of community (the question was cussed by some participants as
back signed consent forms be- For each participant, numeric omitted in interviews with 3 par- alternative ways to define com-
fore their interviews). listings summarized whether or ticipants in Durham and 2 in San munity, while others described
Interviews were tape-recorded, not each code was applied to Francisco). Coding identified 17 them as closely interconnected.
transcribed into computer text that person’s text. Numeric ma- distinct themes or elements that Definitions that included all 5
files, and coded by interview trices were then generated to appeared in the definitions of 2 elements were elicited by 8 par-
question. Verbatim responses to summarize which codes oc- or more respondents (Table 1). ticipants (7%); another 13 defini-
the following question were then curred together in the text of all Hierarchical cluster analysis iden- tions (11%) included all of the
1930 | Community-Based Participatory Research | Peer Reviewed | MacQueen et al. American Journal of Public Health | December 2001, Vol 91, No. 12
TABLE 1—Elements Coded From Definitions of Community From All Sources Within Project LinCS • Paint houses; paint the street;
(n = 113) push brooms; shovel snow; keep
up the area; clean up the block,
Definitional Element Brief Definition No. of Participants Citing Element (%) neighborhood, yard, or house;
Locus Physical location; place with people 87 (77) have block parties
Sharing Shared perspective; common interests 65 (58) • Give food, share resources,
Action Joint action or activities 57 (50) provide for neighbors in need
Ties Social ties, relationships 56 (50) • Watch over, check up on, look
Diversity Differences or diversity (e.g., age, race, income, behavior) 27 (24) out for, keep an eye on each other
Divisiveness Fragmentation, division into disputing factions 17 (15) • Set values and goals for the
Leverage Effectiveness; ability to influence resource availability 17 (15) children, have their butts kicked
Responsibility Importance of accepting consequences of individual action 17 (15) a little bit if they’re slacking off,
Pluralism Coexistence of 2 or more distinct cultural traditions 15 (13) push for the betterment of every-
Criminality Impact of criminal activities 12 (11) one, do something positive, im-
Unity Community fellowship 15 (13) prove the neighborhood
Drug use Impact of drug use and addiction 11 (10) • Get together, do things to-
Nonexistent No community; concept holds no meaning 9 (8) gether, work together, act to-
AIDS Impact of HIV/AIDS 7 (6) gether, participate, plan, get
Services Availability of social services and programs 6 (5) things done, get inspired, engage
Religion Religious or spiritual focus 5 (4) in activities, give input, accom-
Survival Adaptability, resourcefulness 4 (4) plish goals
Other elements 10 (9) • Write, speak, educate, en-
courage, pray
Social ties: the foundation for

core elements except diversity. recreation center; church, • Common issues, threads, be-
community. Social ties were de-
These 2 combinatorial groups ac- school), and in terms of general liefs, factors
scribed in terms of interpersonal
count for 27% of all definitions locations (an area or place • Being in tune with each other
relationships that formed the
offered (Table 2). Each of the where people live together; en- • Comfort, familiarity, togeth-
foundation for community. In
core elements is described be- vironment or surroundings). erness, identity, recognition
some instances, such relation-
low; the quotations in the box on Sharing: common interests and
ships were described as requiring
p 1933 illustrate how these ele- perspectives. Sharing referred to Joint action: a source of cohe-
little, if any, effort or ongoing ac-
ments were woven into actual the existence of shared perspec- sion and identity. Joint action was
knowledgment on the part of the
responses. tives and common interests that described as a source of commu-
individual. The types of relation-
Locus: a sense of place. Locus contributed to a sense of com- nity cohesion and identity. A
ships cited included the follow-
encompassed the idea of community. Community members conscious intent to generate
ing: family, parents, siblings,
munity as something that could were described as sharing the community through action was
cousins; roommates, household;
be located and described, denot- following: not viewed as necessary; rather,
lovers, partners; friends, neigh-
ing a sense of place, locale, or joint action was seen as leading
bors, associates, coworkers, ac-
boundaries. One can be “in” a • Values, norms, mind-set, view- naturally to the creation of com-
quaintances; role models, support
community physically whether point, ideology, beliefs, visions munity. Community was de-
groups.
or not one identified as being a • Passions, obsessions, inter- scribed as emerging from the
In addition, participants often
member of the community. Peo- ests, likes and dislikes, opinions, joint actions of people who did
described characteristics that
ple referred to locus in terms of concerns the following:
they associated with community-
specific areas (neighborhood, • Activities, goals, objectives
based relationships or people.
corner, block; street, road, high- • Symbols, jargon • Socialize, hang out, converse,
Community, participants said,
way; zip code area; village, city, • Skin color, sexual identity intermingle, gossip, “shoot the shit”
meant ties with people
county), with reference to spe- • Tribulations, oppression, re- • Work at the polls, volunteer
cific settings (home, household; pression, history at the library, run phone banks,
workplace; local taproom or bar, train people, work on projects • Whom they can trust
corner grocery store, newsstand, Sharing contributed to a • Keep people informed about • With whom they feel com-
sandwich shop, bookstore; com- sense of community through the resources, services, and what’s fortable
munity building, swimming pool, following: happening • Who care about each other
TABLE 2—Co-Occurrence of Core Elements in Definitions of tasks, such as activists and ser- participant groups but were less
Community From All Sources Within Project LinCS vice providers frequently cited than the core
• The presence of groups that elements (Figure 1B). Overall, at
No. of Respondents identified with overlapping or least 1 of the group-based ele-
Co-Occurring Elements (%) (n = 113)
multiple communities ments was cited by 36 (32%) of
All 5 (locus, sharing, joint action, social ties diversity) 8 (7) • The presence of groups that the participants, including 18
Any 4 22 (20) were disowned, stigmatized, (75%) of the participants from
Diversity, locus, sharing, social ties 2 (2) stereotyped, or distrusted within San Francisco, 8 (32%) from
Joint action, locus, sharing, social ties 13 (12) communities Philadelphia, 4 (18%) from Dur-
Joint action, diversity, sharing, social ties 3 (3) ham, and 6 (14%) of the scientist
As seen in Figure 1A, the
Joint action, diversity, locus, social ties 2 (2) participants. Nineteen partici-
saliency of each of these ele-
Joint action, diversity, locus, sharing 2 (2) pants cited 2 or more group-
ments for the core definition of
Any 3 26 (23) based elements. Discussions cen-
community varied by partici-
Locus, sharing, social ties 5 (4) tered on the implications of
pant group. Action, locus, and
Diversity, sharing, social ties 1 (1) individual-level behavior for the
social ties were the most consis-
Diversity, locus, sharing 3 (3) community as a whole and on
tently discussed elements across
Joint action, locus, social ties 6 (5) the relationship of the commu-
all groups. Sharing predomi-
Joint action, locus, sharing 8 (7) nity to larger society (see box
nated in interviews among sci-
Joint action, diversity, sharing 1 (1) p 1934).
entists and gay men in San
Joint action, diversity, locus 2 (2) Divisiveness referred to de-
Francisco, while diversity was
Any 2 33 (29) scriptions of community frag-
discussed relatively infrequently
Sharing, social ties 1 (1) mentation or a lack of unity,
by all groups except the San
Locus, social ties 11 (10) often expressed as an overem-
Francisco participants. Thus, the
Locus, sharing 6 (5) phasis on individualism and
relative saliency of sharing and
Diversity, sharing 3 (3) self-interest, or as attitudes that
diversity appears to be an im-
Joint action, social ties 2 (2) hindered unity and cooperation.
portant distinguishing character-
Joint action, sharing 3 (3) Divisiveness was often dis-
istic of communities.
Joint action, locus 7 (6) cussed in the context of the
Despite group differences in
Only 1 20 (18) need for or a perceived lack of
the saliency, frequency, and co-
Locus 12 (11) responsibility on the part of
occurrence of the 5 core ele-
Sharing 6 (5) community members.
ments, the overall response
Social ties 2 (2) Discussions of leverage cen-
pattern indicates that these 5
No core elements cited 4 (4) tered on the potential ways that
elements were universally recog-
groups or individuals can bring
nized within each community as
about positive or negative conse-
a whole, if not by every commu-
quences for the community as a
nity member. In anthropologic
• With whom they interact, ethnic distinctions (see the discus- whole. Pluralism referred to dis-
terms, the elements constitute a
hang out, choose to be sociable, sion of pluralism below). Discus- cussions of the maintenance of
common cultural domain.22,23
spend time, connect sions of diversity focused on a distinctions between coexisting
Together, they suggest a full def-
• Who are known to them larger societal view of community ethnic groups. Unlike the core
inition of community as a group
• Whom they always see in and made reference to differ- element of diversity, which fo-
of people with diverse character-
the background or around them ences in interpersonal interaction cused on variability in a wide
istics who are linked by social
• With whom they grew up that resulted from the following: range of individual-level charac-
ties, share common perspectives,
teristics, pluralism implied ethnic
and engage in joint action in ge-
Diversity: social complexity • Different levels of interaction and cultural distinctions among
ographic locations or settings.
within communities. Diversity between people, from the inti- people living in the same area.
emerged in discussions of social mate to the superficial Group-Based Elements of Cultural pluralism is an anthropo-
complexity (e.g., communities • Demographic and social di- Community logic concept defined as “social
within communities, stratification, versity in the form of race, ethnic Like the core elements, the and political interaction within
interwoven groups, hidden com- origin, socioeconomic status, sex- group-based elements of com- the same society of people with
munities, or multiple levels of uality, drug use, profession munity—divisiveness, leverage, different ways of living and
community). As used here, diver- • The presence of specialized pluralism, and responsibility— thinking.”24(p658) The challenges
sity excluded culturally based groups that performed needed had meaning across all of the of living in a pluralistic commu-
that was both separate from and

B
Core Elements of Community
surrounded by a functional local
DURHAM AFRICAN AMERICAN: I think community can be defined in 2 different ways. There’s a community that you define as such because you community that included the ele-
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 ments of locus, action, ties, and
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 sharing.
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 DISCUSSION
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. The Elements of Community
Collectively, the Project LinCS
SCIENTIST: A community is a fairly broad term in my mind that encompasses groups of people working together toward the same goal. . . . participants described commu-
I would say I identify with the HIV research community, the HIV care community, my own personal community with my family, certainly my nity by using a limited set of ele-
regional community. ments that reflect concepts pre-
INTERVIEWER: Okay, when you say family community, is that just your immediate family? viously noted in the social
SCIENTIST: I mean school communities related to my children’s schooling, and the communities here in [place name] that are involved in science literature. Four of the
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 core community elements identi-
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 fied here through empiric
town and nationally. . . . I think that our communities are less dependent these days on actual physical adjacency, if you will, that the Internet means—locus, sharing, joint ac-
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. tion, and social ties—are com-
monly found in social science
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
definitions of community. In an
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
early literature review of 94
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
definitions, Hillery25 found 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
two thirds cited social interac-
surround ourselves with.
tion, geographic area, and com-
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 mon ties as essential elements of
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 community life, and almost
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 three fourths cited area and so-
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 cial interaction. A review of an
the right values for the children. additional 60 definitions subse-
quently published in the social
science literature found little
change beyond a slight increase
nity were described primarily by The Impact of Stress on a lent death of a child prompted a in emphasis on “people with
African American, Latino, and Community similar response, motivating her common ties residing in a com-
Asian/Pacific Islander gay men Two clusters emerged that to work to improve circum- mon geographic area.”26
in San Francisco who attempted centered on stresses affecting stances in her community (see Taking a different approach,
to navigate simultaneously community. The first centered on box p 1935). McKeown and colleagues27 ana-
among problems related to their the negative effects of criminality Statements that community lyzed the way community was
ethnicity (e.g., racism, restrictive and drug use. As seen in Fig- was nonexistent were made by 6 conceptualized in 4 classic ethno-
immigration laws) and those re- ure 1C, although these were respondents from Philadelphia graphic studies conducted by 2
lated to their sexual identity (e.g., more frequently discussed by and 3 from San Francisco. These anthropologists at different stages
homophobia, rejection by family participants in Durham and Phil- discussions often included state- in their careers. They noted over-
members). adelphia, they were described as ments about diversity or pluralism all agreement in the use of 4
Responsibility was discussed in elements that undermine com- as an obstacle to the development basic attributes to describe com-
terms of the way people were or munity in San Francisco as well. of community, by contributing to munity: locality, biological and
should be responsible for their In contrast to the stresses of drug a lack of common identity or un- social membership, common in-
own behavior, including how use and criminality, AIDS was dermining a sense of responsibil- stitutions, and shared actions.
their behavior reflected on or more likely to be described as ity to the group. For the Philadel- From a psychological perspective
affected the community as a something that brought people phia drug users, the lack of and using an empiric approach
whole. As such, leverage and re- together in a common struggle, community was sometimes seen that parallels our own, Chavis
sponsibility were often discussed increasing a sense of unity. For as pervasive, or the drug culture and colleagues28 identified 4 ele-
together. one Durham participant, the vio- was viewed as a noncommunity ments composing a sense of
B
Group-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- (an Israeli kibbutz and 2 dissimilar

ence, integration and fulfillment cities in Maryland) and found that
of needs, and shared emotional neighborhood identification was
connection. important for the development of
Using data from a study in a an actual sense of community.
suburb of Toronto, Wellman and Patrick and Wickizer9 re-
Wortley29 argued that locus was viewed social science definitions
of decreasing importance for of community with an eye to-
urban communities and that these ward developing and implement-
were best described in terms of ing effective community-level
“personal community networks” health interventions. They identi-
that are socially diverse in compo- fied 3 broad conceptual ap-
sition, spatially dispersed, and proaches to the definition of
sparsely knit. Others have sug- community: those that defined
gested that the decreasing impor- community as place, as social in-
Note. San Francisco = gay men in San Francisco, Calif; Philadelphia = injection drug users tance of locus actually leads to a teraction, and as social and politi-
in Philadelphia, Pa; Durham = African Americans in Durham, NC; HIV vaccine sense of the loss of community. cal responsibility. The concept of
researchers = HIV vaccine researchers across the United States.
For example, Glynn30 evaluated social and political responsibility
FIGURE 1—Saliency of definitional elements of community by the relationship between people’s is similar to our core element of
participant group: (A) core elements; (B) group-based elements; ideal sense of community and joint action, combined with our
(C) stress elements. their perception of their actual group-based elements. Patrick
community in 3 diverse settings and Wickizer9(p51) offered a work-
B
Impact of Stress on a Community function is likely to increase in action and social ties, while mini-
other locations and for other mally discussing the role of di-
PHILADELPHIA IDU: Do you know how many people was tryin’ to rob me outta that coat populations. The challenges pre- versity. African American partici-
right there? [Points to her coat on hanger.] I mean, these are people that’s in the sented by local diversity, in turn, pants in Durham included more
community, okay, and that this is supposed to be a community—why is everybody doin’ are likely to become increasingly college-educated and nonhetero-
what they doin’ to one another? important for public health ef- sexual individuals than did Phila-
forts as well. delphia participants and, perhaps
SAN FRANCISCO GAY MAN: Crystal meth has really bothered me, just ’cause I see it as
as a result, were somewhat more
really damaging to my community. . . . I see people whose lives are getting all messed up,
Implications of the likely to discuss the role of
and I see that it’s everywhere. I mean, it’s almost epidemic in the gay community.
Experience of Community for shared perspectives for commu-
DURHAM AFRICAN AMERICAN: I never mingled or associated with anyone. I didn’t want to Collaboration nity than were Philadelphia par-
be a part, you know, but I think the thing that really brought me out was when the [child] The saliency of the different ticipants. In both Durham and
got killed over here. . . . The child was sittin’ out on the stoop, other people were sittin’ out elements of community for each Philadelphia, most people de-
on their stoop and stuff, and it was someone shootin’ at another person, and one of the of our 4 participant groups had scribed community as a “given”
shots hit the child and she got killed over here in our neighborhood, and I think that is implications for the ways in in their immediate environment.
what basically brought me out to want to be a part of the community and get something which our collaborations devel- However, for IDUs, the given
done about what’s goin’ on over here. oped. For gay men in San Fran- community environment was less
cisco, a strong sense of shared likely to be described as sup-
SAN FRANCISCO GAY MAN: . . . as I get older, I have a stronger sense of [community], or a history and perspective was a portive than for African Ameri-
stronger sense of commitment to the community. I mean, you know, that’s why I’m getting dominant theme, followed by a cans in Durham.
increasingly involved with AIDS activities. sense of identity with a specific These differences in the way
location, the creation of strong people perceived and talked
SAN FRANCISCO GAY MAN: I don’t think we have much of a gay community, unfortunately.
and lasting social ties, established about the core elements of com-
I wish we did. But we don’t because of what we are. We’re everything. We’re Black and
avenues for joint action, and the munity suggest the need for mul-
we’re White and we’re poor and we’re rich, so how can we have a gay community—I think
role of diversity. This profile is tiple models of collaboration for
that’s a really silly word, the “gay community,” because it doesn’t really exist. That’s like
superficially similar to the one public health research and pro-
the White, male, heterosexual community. I think that’s silly.
elicited from the vaccine re- grams. In fact, the collaborations
PHILADELPHIA IDU: You ask me what the community is. Nothin’, zilch. To me there is no searchers; however, particular we established in San Francisco,
damn community. elements were discussed less fre- Durham, and Philadelphia illus-
quently than in San Francisco. trate this need. At each site, re-
Significant differences also ex- searchers worked with a commu-
isted with regard to how the ele- nity advisory board (CAB), but in
ing definition of community as sents a major challenge for suc- ments were discussed. Most of different ways.
“the entire complex of social rela- cessful community participation the San Francisco participants The San Francisco collabora-
tionships in a given locale, and in setting health policy. The fact had thought about community, tion. In San Francisco, commu-
their dynamic interaction and that diversity emerged as a core and many were struggling to rec- nity advocates and activists were
evolution in working toward [the] element in our empiric explo- oncile their need for community collaborating with HIV vaccine
solution of health problems.” ration of definitions of commu- with a sense of marginalization researchers before Project LinCS
The importance of local diver- nity was driven to a great extent from society at large. In contrast, was funded. Consistent with the
sity has not been previously ar- by the experiences of the gay the scientists tended to describe emphasis on sharing seen in
ticulated in definitions of com- men who were interviewed. San themselves as well grounded in Figure 1A, the CAB members
munity, although the effect of Francisco is a national and inter- multiple communities. placed a high value on opportu-
such diversity on health mea- national meeting ground for gay The profiles for Durham and nities for in-depth discussion
sures has been noted. For exam- men. The interviews we con- Philadelphia also had a surface with both local and nonlocal
ple, Sampson and colleagues31 ducted suggest that many of resemblance to each other. In Project LinCS collaborators. Sim-
pointed to the need to explore them are consciously seeking to contrast with San Francisco ilarly, they recognized the im-
the meaning and sources of vari- build a community based on a participants and the scientists, portance of existing social ties
ation within neighborhoods or positive valuing of unity, diver- Durham and Philadelphia partici- and activities and were careful
local communities for collective sity, and cultural pluralism. With pants viewed locus as the princi- not to allow Project LinCS to
efficacy for children. Zakus and increased mobility and immigra- pal element of community. This draw energy away from other
Lysack16 noted that communities tion throughout the United was especially true for IDUs in HIV vaccine work. As a result of
are rarely, if ever, a homoge- States, the importance of diver- Philadelphia. Both groups em- their long involvement in treat-
neous whole and that this repre- sity for community structure and phasized the importance of joint ment and prevention activities,
many San Francisco CAB mem- The Philadelphia collaboration. household residents in Chicago approach to community-level and
bers had a sophisticated under- The Philadelphia investigators and Cook County, Illinois. The community-based public health
standing of research. Reflecting had a long-standing relationship results showed substantial agree- research and programs.
the saliency of joint action for with IDUs that centered on a ment in priorities, indicating that
the community, the CAB used storefront research program. advisory boards can effectively CONCLUSIONS
this knowledge to take an active About a year before Project represent community perspec-
role in developing the protocol LinCS began, the investigators tives regarding health priorities. The results of our analysis
and interview guide for the sci- invited study participants to form Jewkes and Murcott33 presented point to a core definition of com-
entists. Additionally, half of the a CAB. The meetings were ini- results of a qualitative assess- munity as a group of people with
scientist interviews were con- tially chaired by the principal in- ment of the uses, meanings, and diverse characteristics who are
ducted by a San Francisco CAB vestigator, but later the CAB interpretations of community linked by social ties, share common
member (with full support from members established their own participation in the context of the perspectives, and engage in joint
the Philadelphia and Durham set of rules and took on increas- World Health Organization’s action in geographical locations or
CABs). The CAB also collabo- ing responsibility for the func- Healthy Cities Project as imple- settings. Our results further sug-
rated with local investigators in tioning of the board. Philadelphia mented in the United Kingdom. gest that a cookbook approach to
the development of a complex LinCS participants emphasized In interviews with 50 partici- participatory programs and re-
targeted sampling plan to ensure locus, action, and social ties in pants drawn from health, local search will not work because the
maximal diversity of Project their definitions of community. government, and voluntary sec- experience of community differs
LinCS participants, reflecting Similarly, the CAB defined its tors, they found that “being from one setting to another.
their awareness of the important primary role as one of maintain- known” was the most fundamen- Rather, each research collabora-
role of diversity and pluralism in ing and building linkages be- tal requirement of an effective tion, and each level of collabora-
their community. tween the research staff and the representative. Data from a case tion from the local to the na-
The Durham collaboration. In IDUs in the surrounding neigh- study by Bond and Keys34(p37) tional and the international, must
Durham, the African American borhoods, a community that support the feasibility of empow- reconcile the differences and sim-
community was beginning to functioned largely through infor- ering multiple community groups ilarities among the participating
mobilize around AIDS when mal structures and at the margins simultaneously through a single communities.
Project LinCS began. Here, the of society. advisory board “when the board Community collaboration in
local investigators had to reach culture promoted inclusionary public health programs and re-
out widely to people and organi- The Role of Community group processes and the activa- search presents many challenges,
zations with links to the African Representation for tion of member resources.” in part because community has
American community. A socio- Collaboration If collaboration is to be an ef- been defined in ambiguous and
economically diverse group of Israel and colleagues13 and fective component of public contradictory ways. Despite im-
representatives came together Zakus and Lysack16 noted that health research and programs, it portant differences in the experi-
and volunteered to work with participatory approaches such as will require a greater under- ence of community, our study
the researchers, meeting at a his- ours that rely on representation standing of the way people inter- suggests that people largely agree
torically African American uni- can lead to conflicts with regard act individually and as groups. about what community is. The
versity campus in Durham. Con- to how community is defined The definition of community pro- empiric evidence, in turn, is bol-
sistent with our analysis that and who may legitimately repre- vided in this commentary sup- stered by established social sci-
showed an emphasis in Durham sent the community. Our experi- plies a potential framework for ence theory. Additionally, exist-
on locus and joint action, the ences, and our empiric data, sug- investigating such interactions. ing social science tools provide a
CAB focused its efforts on mak- gest that an important element Each of the core elements com- strong foundation for measuring
ing sure that the project pro- for success may be ensuring that posing community (locus, shar- and evaluating the contributions
vided tangible benefits to the CAB representatives are actively ing, joint action, social ties, and of community collaboration to
local community. These efforts connected to diverse people in diversity) can be evaluated rela- the achievement of public health
resulted in a brochure on ques- their local communities and em- tive to public health outcomes objectives.
tions to ask when volunteers powered to function in ways that through existing social science Thus, a sound empiric and
were invited to participate in re- are meaningful to their commu- models, including social network theoretic basis exists for achiev-
search and a local newspaper in- nity base. Other research sup- analysis,35–37 sense of commu- ing consensus on a definition of
sert on lessons learned from the ports this view. Conway and col- nity,38–42 social capital,43,44 cul- community for public health.
project, which was distributed to leagues32 compared perceptions tural domain analysis,22,23,45,46 Consensus will facilitate the sys-
more than 11 000 houses in pre- of health priorities among local and geographic information systematic comparison of local pop-
dominantly African American District Health Council members tems.47 Such models provide a ulations by directing attention to
neighborhoods. and among a random sample of solid foundation for a systematic a set of core elements for mea-
surement. Systematic compari- and Prevention, Mail Stop E-06, Atlanta, Annu Rev Public Health. 2000;21: 22. Borgatti SP. Elicitation techniques
son, in turn, will facilitate hypoth- GA 30333. 369–402. for cultural domain analysis. In: Schen-
This commentary was accepted June 9. Patrick DL, Wickizer TM. Commu- sul JJ, LeCompte MD, Nastasi BK, Bor-
esis testing and strengthen the 29, 2001. gatti SP, eds. Enhanced Ethnographic
nity and health. In: Amick BC, Levine S,
scientific study of the role of Tarlov AR, Walsh DC, eds. Society and Methods. Walnut Creek, Calif: AltaMira
community in public health. For Health. New York, NY: Oxford Univer- Press; 1999:115–151.
Contributors
example, it could help us identify K. M. MacQueen contributed to the con- sity Press Inc; 1995:46–92. 23. Bernard HR. Research Methods in
ception, analysis, and interpretation of 10. Gillies P. Effectiveness of alliances Anthropology. 2nd ed. Thousand Oaks,
functional thresholds for the core Calif: Sage Publications; 1994.
data and was the principal author. E. and partnerships for health promotion.
elements, such that groups above McLellan contributed to analysis, inter- Health Promot Int. 1998;13:99–120. 24. Haviland WA. Cultural Anthropol-
the threshold are significantly pretation, and authorship. D. S. Metzger, 11. Kreuter M, Lezin N. Are Consortia/ ogy. 6th ed. Chicago, Ill: Holt & Win-
more likely to experience benefi- S. Kegeles, R. P. Strauss, and L. Blan- Collaboratives Effective in Changing ston; 1990.
chard contributed to the conception, ac- Health Status and Health Systems? A 25. Hillery GA. Definitions of commu-
cial health outcomes than those quisition of data, and critical revision. R. Critical Review of the Literature. Atlanta, nity: areas of agreement. Rural Sociol.
below the threshold. In other Scotti contributed to analysis, interpreta- Ga: Health 2000 Inc; 1998. 1955;20:111–124.
words, it can help us understand tion, and acquisition of data. R. T. Trotter
II contributed to the conception, analy- 12. Beeker C, Guenther-Grey C, Raj A. 26. Willis CL. Definitions of commu-
how to build and support “good” sis, interpretation, and critical revision. Community empowerment paradigm nity, II: an examination of definitions of
drift and the primary prevention of community since 1950. South Sociolo-
communities that enhance the
HIV/AIDS. Soc Sci Med. 1998;46: gist. 1977;9:14–19.
health of their members. It can Acknowledgments 831–842. 27. McKeown CT, Rubinstein RA,
help us understand which char- This research was supported by Centers
13. Israel BA, Schulz AJ, Parker EA, Kelly JG. Anthropology, the meaning of
for Disease Control and Prevention coop-
acteristics or combinations of Becker AB. Review of community-based community, and prevention. In: Felner
erative agreements U48/CCU409660 RD, Jason LA, Hess RE, Moritsugu JN,
characteristics are necessary or research: assessing partnership ap-
(University of North Carolina at Chapel eds. Prevention: Toward a Multidiscipli-
proaches to improve public health.
sufficient for supporting interme- Hill), U64/CCU910851 (University of
Annu Rev Public Health. 1998;19: nary Approach. New York, NY: The Ha-
California at San Francisco), and U64/
diate goals such as the sustain- 173–202. worth Press; 1987:35–64.
CCU310867 (University of Pennsylvania).
ability of prevention programs or 14. Dearing JW, Larson RS, Randall 28. Chavis DM, Hogge JH, McMillan
LM, Pope RS. Local reinvention of the DW, Wandersman A. Sense of commu-
the diffusion of beneficial health
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Issues Over the Long Haul of Human Tri-
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About the Authors
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At the time of the study, Kathleen M.
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The Role of Community Advisory Boards: Involving

Communities in the Informed Consent Process
Ethical research involving human 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
subjects mandates that individual
informed consent be obtained from
research participants or from sur-
rogates when participants are not INDIVIDUAL INFORMED between researchers, study par- include specific references to ob-
able to consent for themselves.The consent has traditionally been ticipants, and communities that taining informed consent. The
existing requirements for informed understood as a substantive eth- will protect participants. Council for International Organi-
consent assume that all study par- ical requirement, an agreement Here we review examples of zations of Medical Sciences and
ticipants have personal autonomy; between the researcher and the situations in which the required the World Medical Association,
fully comprehend the purpose, risks, research subject concerning the process of individual informed which focus on international re-
roles and obligations of each consent failed to ensure that search, and the National Com-
and benefits of the research; and
party in a study. The researcher study participants were fully mission for the Protection of
volunteer for projects that disclose
seeks to enroll fully informed, aware of the implications of their Human Subjects of Biomedical
all relevant information. Yet con-
consenting, individual subjects involvement. In response to this and Behavioral Research, which
temporary examples of lapses in the in a study. When informed con- problem, we propose that indi- focuses on research conducted
individual informed consent process sent is not obtained, or when vidual informed consent be aug- nationally, are responsible for
have been reported. subjects are not fully informed, mented by community advisory setting and amending the guide-
Theauthorsproposetheuseofcom- research abuses can occur. Com- boards (CABs), which can facili- lines that govern research on
munity advisory boards, which can fa- munity activists, joined by some tate research by advising about human subjects.
cilitate research by providing advice scientists, have publicized the the informed consent process The Council for International
about the informed consent process limitations of individual in- and the design and implementa- Organizations of Medical Sci-
and the design and implementation of formed consent and have ar- tion of a study. ences has formulated 15 guide-
research protocols. These activities gued for the incorporation of lines, 9 of which, in its most re-
could help reduce the number of indi- community perspectives or BACKGROUND ON cent document, address issues
“voices” during informed con- INDIVIDUAL INFORMED of informed consent. These is-
vidual informed consent lapses,bene-
sent and throughout the re- CONSENT sues include those that may
fiting study participants and the scien-
search process.1–4 Community occur in vulnerable populations
tificintegrityoftheresearchinquestion. involvement has been part of in- Since the Nuremberg Code of (e.g., women, the mentally chal-
(Am J Public Health. 2001;91: ternational research in develop- 1947,5 several organizations lenged, minors) where individ-
1938–1943) ing countries for some time. Is- have worked to provide a set of ual informed consent would be
sues of culture and individual ethical guidelines for the con- difficult, if not impossible, to
autonomy, however, must be duct of research involving achieve.6 The World Medical
dealt with to create partnerships human subjects; these guidelines Association has recently
1938 | Community-Based Participatory Research | Peer Reviewed | Strauss et al. American Journal of Public Health | December 2001, Vol 91, No. 12
amended the Declaration of be conveyed to subjects in an and developing countries, in where research abuses were re-
Helsinki, positing 7 principles easily comprehensible manner, which informed consent has ported,19,21 the federal Office for
for obtaining informed consent and that subjects endorse state- failed to ensure that partici- Protection From Research Risks
that not only address consent ments indicating that their par- pants recognized that their par- (now the Office of Human Re-
involving vulnerable popula- ticipation is voluntary—that is, ticipation was voluntary, under- search Protections) of the US
tions but also include practical free of coercion and undue in- stood the research in question Department of Health and
guidance on obtaining consent fluence. Researchers have an (including study terminology Human Services cited the man-
in situations where medical re- ethical and legal obligation to and all potential benefits and ner in which research subjects
search is combined with med- ensure that these 3 elements of risks), and were sufficiently in- or parents of research subjects
ical care.7 informed consent are honored formed to make an educated were informed about the stud-
Finally, the Belmont Report,8 when individuals agree to par- decision regarding their partici- ies. Given that the target popula-
developed by the National ticipate in research.9 pation. tions in these studies were vul-
Commission for the Protection The examples listed in Table nerable (children and poor,
of Human Subjects of Biomed- RESEARCH LAPSES 1 illustrate that the require- HIV-seropositive Haitians),
ical and Behavioral Research, RELATING TO INDIVIDUAL ments of informed consent—vol- greater efforts are necessary to
establishes 3 fundamental ethi- INFORMED CONSENT untariness, full disclosure, and ensure that the rights of all
cal principles that are relevant comprehension—do not always human subjects are protected.
to informed consent—respect for Although informed consent protect or sufficiently inform We believe that protecting and
persons, beneficence, and justice. requirements were established human research subjects.11–27 fully informing human research
These principles require that specifically for the purpose of Furthermore, over 90% of the subjects requires supplementing
sufficient information about the providing protection for human cases in which research abuses the current methods of obtain-
study in question (e.g., risks and subjects, these requirements have taken place are associated ing informed consent with in-
benefits) be disclosed to study are insufficient. Recent exam- with lapses in informed con- creased involvement and advo-
subjects, that the information ples exist, in both industrial sent.28 Indeed, in 2 studies 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
December 2001, Vol 91, No. 12 | American Journal of Public Health Strauss et al. | Peer Reviewed | Community-Based Participatory Research | 1939
PROMOTING EFFECTIVE the participant. Using the princi- American community (e.g., the CAB, and the investigators.
INDIVIDUAL INFORMED ples of community consultation young women, faith leaders) It is assumed that participants
CONSENT and participatory research,4,29 could serve on a CAB that is have a high degree of personal
we recommend enhancing this linked to a community-based autonomy and therefore fulfill
A Proposal to Implement process by developing a partner- study testing a comprehensive their functions and responsibili-
Greater CAB Involvement ship between researchers and prenatal program for high-risk ties for each of the informed
The lapses of the individual the community. minority pregnant women. consent elements listed. Simi-
informed consent process dem- A CAB is composed of com- Using CABs to facilitate the larly, investigators are expected
onstrate that participants may munity members who share a informed consent process fun- to fulfill their roles in protecting
not be autonomous in their abil- common identity, history, sym- damentally changes how re- and fully informing participants
ity to make decisions about bols and language, and culture.30 searchers relate to participants. by adhering to their functions
research participation and that For example, gay activists and Table 2 illustrates how this and responsibilities.
researchers may not always re- gay HIV-affected individuals might work; the elements of in- The CAB, since its members
spect the interests of human sub- could serve on a CAB for an formed consent developed by come from the same community
jects while pursuing the goals of AIDS clinical trials group inter- Beauchamp and Childress31 are as the participants, serves as a li-
research. Traditionally, informed ested in recruiting participants used as the basis for defining aison between participants and
consent focuses on the relation- from the gay community. Repre- the functions and responsibili- researchers. In this role, the CAB
ship between the researcher and sentatives from the African ties of the study participants, can help in the development of
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 relevant
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
materials that explain the study the call for greater community exposed participants to risk. The • The local San Francisco
to participants and can represent involvement in research by re- study was closed prematurely by HIVNET CAB wanted to ensure
the participants’ concerns to the quiring scientists to incorporate an interim review committee, that individuals being enrolled in
researchers. The CAB can act as CABs into their research proto- which determined that the risk of the commercially sponsored
an advocate for the rights of cols, particularly in randomized virologic rebound was clearly phase III preventive HIV vaccine
human subjects, for example, by placebo-controlled clinical trials weighted in the 1- and 2-drug trial were provided with suffi-
conveying to participants their of experimental therapies and arms. This decision convinced cient information to make a fully
right to refuse or their right to vaccines in HIV/AIDS research. the principal investigator not to educated decision about partici-
full disclosure of information By 1990, the National Insti- implement the protocol at the pation. In particular, CAB mem-
about the benefits and risks of tute of Allergy and Infectious San Francisco site. bers were concerned that poten-
the study and about previous rel- Diseases (NIAID) had formally The HIV Network for Preven- tial participants might not fully
evant research. Finally, the CAB integrated community represen- tion Trials (HIVNET) was estab- comprehend the content of the
can provide a set of recommen- tatives into the AIDS Clinical lished in 1993 to conduct domes- consent forms. Thus, the in-
dations to help potential partici- Trials Group (ACTG), the Center tic and international multicenter formed consent process was
pants decide whether or not to for AIDS Research, and the trials, with a primary focus on lengthened into several visits so
participate in a study. Community Programs for Clini- conducting phase I and II clinical that these individuals would
cal Research on AIDS to involve trials of HIV vaccines.33 In the have time to ask questions and
Practical Examples of CABs community members who had following examples, HIVNET digest the information given to
in the Research Process raised concerns about the con- CABs played a role in advocating them before making a decision
This section highlights some of duct of AIDS clinical trials.32 compensation for trial-related in- to participate.
the ways in which CABs can be Currently, each of these NIAID- juries and full disclosure of infor-
implemented in research involv- sponsored programs is expected mation explaining the benefits The HIV Cost and Services
ing human subjects. These exam- to have a local CAB, with one and risks associated with trial Utilization Study (HCSUS) and
ples come from AIDS research, member of each CAB serving on participation. the CDC/NIAID-funded Project
because the history and experi- a national-level advisory board LinCS (Linking Communities
ence of using CABs in AIDS- called a Community Con- • The national HIVNET CAB and Scientists) showed that CAB
related research have been de- stituency Group. convinced both NIAID and 2 participation has the advantage
scribed previously.32–40 CAB Local CABs can be influential pharmaceutical sponsors to guar- of forging a true partnership
involvement can, however, be ex- in halting the progress of clinical antee compensation for medical with scientists from the studies’
tended to research on other dis- trials, as shown in the following costs incurred by participants in inception.
eases that disproportionately af- example. A CAB helped prevent the event of physiological harm
fect communities of color or 2 ACTG study protocols from caused by the candidate preven- • HCSUS created a 12-mem-
communities that share a specific being initiated at the San Fran- tive HIV vaccine tested that year ber national CAB that func-
identity. These examples also are cisco, Calif, site, even though in a phase II trial.34 Without tioned as a conduit for ensuring
predominantly from clinical trials both protocols were up and run- CAB input, this issue might have participation of HIV-seropositive
research, but CAB involvement ning at the national level. Re- been overlooked by the vaccine individuals and their advocates
can be applied to community- garding ACTG 320, which had trial researchers. in the planning and implementa-
based prevention research (e.g., two arms—AZT/3TC/placebo • The national HIVNET CAB tion phases of clinical trial re-
testing a behavioral intervention) and AZT/3TC/Crixivan—the San was instrumental in creating a search.35–36 Among its activities,
as well. Francisco CAB felt that there participants’ bill of rights despite the HCSUS CAB contributed by
Formalizing community in- were enough data to substantiate objections from local principal identifying research priorities, in-
volvement in research through the benefits of Crixivan in reduc- investigators, who believed that cluding a greater emphasis on
the use of CABs may greatly im- ing viral load, and thus having a the bill of rights simply restated women-specific issues, and areas
prove the informed consent pro- placebo arm was considered un- the consent form. The national of research inquiry that had not
cess, study design, and study im- ethical. In ACTG 343, partici- CAB members thought other- been proposed by the research-
plementation at different levels pants were randomized to either wise, recognizing that individuals ers before. This CAB was also
of the research. CAB participa- a 3-drug, 2-drug, or 1-drug regi- need to understand their rights helpful in the day-to-day opera-
tion has the potential for affect- men after having been on suc- as trial volunteers, given the list tions of the study, for example,
ing clinical trials of experimental cessful antiretroviral therapy for of social harms associated with by reviewing informed consent
therapies, particularly those tar- 6 months. The San Francisco participation, and that such a forms for content and compre-
geting vulnerable populations. CAB felt that randomizing pa- document would be an impor- hensibility.
Some US federal and state fund- tients to receive less than the tant tool for communication in • Project LinCS used CABs to
ing agencies have responded to standard of care unnecessarily their respective communities. assist in examining community
perceptions about HIV vaccine guide research. A principal inves- about research enrollment and tion is apparent. CABs reinforce
efficacy trials.37 Three sites (San tigator who is willing to listen to the authorization of research will the importance of community in-
Francisco, Calif; Philadelphia, Pa; the concerns of the CAB and to be an individual choice. Yet com- volvement in the decision-making
and Durham, NC) formed and obtain feedback from its mem- munity perceptions of research process from the inception of a
worked with local CABs, and bers may be a requirement for and of a specific research project research study, to ensure that
these CABs contributed to differ- an effective CAB. may guide individual action. consenting human subjects are
ent aspects of the research, in- Second, the resources allo- Having a CAB provides a context fully informed about the study in
cluding problem identification, cated to the development and for researchers and community question. We hope that the exam-
participant recruitment, research management of CABs tend to be members to discuss the intent, ples of CAB participation pre-
monitoring (including retention limited and are often the first to risks, benefits, and implications sented here have demonstrated
and follow-up), and dissemina- be cut from study budgets when of research projects in culturally the crucial role communities can
tion of study findings.38 Had research priorities are consid- sensitive terms. play in the ethical conduct of re-
CABs not been used, the ability ered. Indeed, in the first phase III In spite of the increasing use search and how community input
of Project LinCS to recruit study trial of a candidate HIV vaccine, of CABs, there has been only may enhance, not detract from,
participants, as well as the qual- the private financial sponsor did limited investigation into their the research process.
ity of the interview data col- not provide funding for CAB de- impact on the design and imple-
lected, would have been greatly velopment at its 50 North Amer- mentation of research, particu-
affected. Furthermore, 2 re- ican trial sites, and a national larly AIDS research, where their About the Authors
Ronald P. Strauss is with the Department
sources have been developed CAB had not been assembled use is most prevalent. Some at- of Dental Ecology, School of Dentistry; the
with assistance from Project when the study began.1 tention has been given to exam- Department of Social Medicine, School of
LinCS CABs. First, a video was Finally, greater CAB imple- ining how CABs can enhance re- Medicine; and the Center for AIDS Re-
search, University of North Carolina at
developed that discusses the 3 mentation is needed in develop- cruitment and participation in Chapel Hill. At the time of the study, So-
communities’ perspectives on ing countries, particularly in clini- AIDS clinical trials.32 No studies, hini Sengupta was, and Susan M. Kegeles
participating in phase III preven- cal studies, where there is more however, have systematically is, with the Center for AIDS Prevention
Studies, University of California, San
tive HIV vaccine trials.39 Second, at stake in terms of potential risks evaluated the lessons learned Francisco. Sandra Crouse Quinn is with
the Durham CAB assisted in the and social harms. Community in- from using CABs and their im- the Department of Health Services Admin-
development of a brochure that volvement sometimes means hav- pact on effecting change in the istration, University of Pittsburgh, Pitts-
burgh, Pa. Jean Goeppinger is with the
provides a list of questions for ing trusted local leaders or even way in which research is con- Schools of Nursing and Public Health,
potential study participants to family members act as liaisons ducted. Indeed, one of the criti- University of North Carolina at Chapel
ask researchers before deciding between scientists and study par- cisms of CAB participation in Hill. Cora Spaulding is with the Depart-
ment of Family Medicine, School of Medi-
whether or not to participate in ticipants.2,41–42 This mechanism, the research process has to do cine, University of North Carolina at
any given study.40 however, has its limitations; re- with not having enough infor- Chapel Hill. Greg Millett is with the De-
placing the autonomy of the indi- mation about the structure of a partment of Health Education, University
of Alabama in Birmingham.
CRITICISMS OF CABS vidual with the judgment of a CAB and how it works to appre- Requests for reprints should be sent to
community leader or family ciate and evaluate its ability to Ronald P. Strauss, DMD, PhD, School of
All research involving human member may not be in the best guide, speak for, and protect its Dentistry, University of North Carolina at
Chapel Hill, CB #7450, Chapel Hill, NC
subjects, particularly clinical and interests of prospective research community.43 27599-7450 (e-mail: ron_strauss@
behavioral studies, could benefit participants. On the other hand, We recognize this as a limita- unc.edu).
by having CABs or equivalents to if developing countries could tion. We call for a greater effort This commentary was accepted Janu-
ary 23, 2001.
provide advice about informed adopt CABs as a component of to devise methods of training in-
consent protocols, subject enroll- clinical research, individual investigators in the development
ment, research design, and imple- formed consent failures, such as and maintenance of CABs and in Contributors
R. P. Strauss and S. Sengupta planned
mentation. Yet the use of CABs confusion over study terminology the selection of community advi- and led the writing of this commentary,
has not always been seen as con- (e.g., what it means to receive a sors who will see that the inter- using the input, ideas, and revisions of-
ducive to the research process. placebo) and participants’ not ests of the target community, as fered by the other authors. S. Sengupta
examined the history of ethical lapses in
For example, CABs in clinical being fully informed, could be well as the research priorities of research. S. C. Quinn and J. Goeppinger
trial research are often viewed by avoided or at least minimized. the investigators, are considered. reviewed the literature and examined
researchers as auxiliary, or as In a climate where formal re- the theoretical aspects of informed con-
sent and participatory research. C.
“window-dressing.”1 Indeed, it is CONCLUSION search safeguards do not always Spaulding, S. M. Kegeles, G. Millett, and
likely that the dynamic between succeed in protecting the rights of R. P. Strauss used their experiences in
the principal investigator and the In most situations, investiga- human subjects, the need for working with community advisory
boards to provide historical and practi-
CAB may dictate the extent to tors and potential research sub- community-based methods to cal examples of how communities have
which a CAB can influence and jects expect that the decision augment the process of protec- been involved in research.
Acknowledgments 10. Karim QA, Karim SSA, Coovadia 25. US medical researchers flout rules NMP, Henderson GE, Stein J, eds. Be-
This work was supported in part by HM, Susser M. Informed consent for around the world. Cleveland Plain yond Regulations: Ethics in Human Sub-
UNC-CH, Center for AIDS Research, a HIV testing in a South African hospital: Dealer. November 8, 1998:1A, 12A. jects Research. Chapel Hill, NC: Univer-
program funded by the National Institute is it truly informed and truly voluntary? 26. Markowitz LE, Bernier RH. Immu- sity of North Carolina Press; 1999:
of Child Health and Human Develop- Am J Public Health. 1998;88:637–640. nization of young infants with Edmon- 85–93.
ment (P30-HD37260); the Centers for 11. Snowdon C, Garcia J, Elbourne D. ston-Zagreb measles vaccine. Pediatr In- 38. Strauss RP. Community advisory
Disease Control and Prevention, cooper- Making sense of randomization: re- fect Dis J. 1987;6:809–812. board–investigator relationship in com-
ative agreement U48/CCU409660; and sponses of parents of critically ill babies 27. Measles, government, and trust: ir- munity-based research. In: King NMP,
grant T32 MH19105 from the National to random allocation of treatment in a regularities like those of 1989–91 LA Henderson GE, Stein J, eds. Beyond Reg-
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Cathy Emrick, MPH, for her assistance.
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28. Youth’s death shaking up field of
Prevention of mother-to-child transmis- gene experiments on humans. New York 39. University of Pennsylvania Center
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What Is Community? An Evidence-Based Definition For Participatory Public Health

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What Is Community? An Evidence-Based Deﬁnition for Participatory Public

Article in American Journal of Public Health · January 2002

Kathleen M Macqueen Eleanor McLellan-Lemal

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David S Metzger Susan Kegeles

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Replicating Effective Programs View project

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Can Public Health Researchers and Agencies

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Source. Green et al.9

FIGURE 2—Degree of participation by different stakeholders, by type of research or community action.

What Is Community? An Evidence-Based Definition

Social ties: the foundation for

that was both separate from and

Divisiveness and Responsibility:

Leverage and Responsibility:

community: membership, influ- (an Israeli kibbutz and 2 dissimilar

The Role of Community Advisory Boards: Involving

TABLE 1—Examples of Research Lapses Relating to Individual Informed Consent

Lapse Explanation Examples

Functions and Responsibilities

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