INTRODUCTION
The North American Primary Care Research Group (NAPCRG)
was founded on the premise of developing and disseminating new knowledge
regarding primary care. Its mission is to improve the health of individuals,
families and communities in North America, and internationally through
the development and dissemination of new knowledge applicable to primary
care research, organization and education.
In keeping with the mission of NAPCRG, this policy
statement is designed to encourage the development of respectful collaboration
with communities in primary care research. It encourages NAPCRG members
to seek opportunities to work in partnership with communities to ensure
that theoretical and applied benefits are clear and significant to
both the researcher and the community. NAPCRG affirms a commitment
to respectful development and dissemination of new knowledge by examining
the utility of research approaches such as participatorya research
(PR) in primary care [1,2,3]. This policy statement examines the need
for, benefits of, and ethics of, fully collaborative, participatory
research with communities. As the President of NAPCRG, Dr William
Phillips, observed in 1995, "NAPCRG should help push forward the boundaries
to meet these challenges." He emphasized the need for researchers
to have a balance of critical analysis and creativity and that "primary
care research must focus not only on the costs of care but also on
the causes of disease; not just the mechanism of efficiency in systems
but the meaning of illness in patients' lives; not just health services
to populations but the healing of persons and the health of communities."
[4]
The traditional research approach has considered individuals
and communities to be "subjects" or "objects" of health research.
Current developments in ethics, and research methods, and an expanding
recognition of what constitutes expert knowledge, justify the heightened
participation of individuals and communities. Primary care providers
are uniquely positioned to engage members of the communities in which
they work, thus sharing the research process.
The following sections provide a review of the origin
and rationale for practicing PR, the rationale and strategies for
integrating community collaboration, the attendant challenges and
ethical considerations, and, finally, the policy recommendations.
A comprehensive list of relevant references is also included as endnotes.
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KEY TERMS
Primary care is the provision of integrated, accessible
health care services by professionals who are accountable for addressing
a large majority of personal health care needs, developing a sustained
partnership with patients, and practicing in the context of family
and community.
Community is any group of individuals sharing a common
interest. This definition includes cultural, social, political, health
and economic issues that may link together individuals who may or
may not share a particular geographic association.
Participatory research (PR) is a process which incorporates
"systematic inquiry, with the collaboration of those affected by the
issue being studied, for the purpose of education and taking action
or effecting social change" [5].
Collaboration is a research partnership among equals
with complementary knowledge/expertise.
Partnership is the process of establishing and sustaining
a mutually respectful relationship based on the sharing of responsibilities,
costs and benefits, with outcomes that are satisfactory to all partners.
Empowerment is the process of enabling groups and individuals
(via the removal of barriers, provision of needed resources and sharing
of knowledge) to gain understanding and control over personal, economic,
social and political conditions and circumstances, in order to improve
their life situations (Hulme 1998).
Science includes "all approaches to science that consider
scientific knowledge to be obtainable only from sense data that can
be directly experienced and verified between independent observers.
[It is] value free, logical, empirical.
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RATIONALE: WHY PR?
Background
Research is a systematic inquiry. Its aim is to discover
and interpret new knowledge that adds to the domain of knowledge.
Classical/traditional methods in health and social science research
have been slow to address cultural and ethical factors in research
which have implications for the interpretation of the findings [6,7].
PR attempts to negotiate a balance between the development of valid
generalizable knowledge and meaningful community benefit.
PR strategies that aim to include the cultural context
have their roots in the development ideologies, which emerged in the
1960s and 70s. As a movement for social justice, PR has long been
practiced in international development settings[8,9,10,11,12]. Such
strategies were developed to address the failure of other approaches
to ameliorate social and economic conditions or effect change [13],
and the consequent alienation of the people being studied [14]. In
addition minority communities distrust researchers because:
- traditional knowledge has been used inappropriately, out of
context, or for financial or professional profit with no obvious
benefit to the community [15];
- destructive notoriety or stigmatization has resulted from the
public reporting of research results [16];
- direct harm has occurred without recourse [16 17] and
- traditional research findings lack relevance and fail to inform
questions of practice or social use [18].
Other studies affirm these findings [19,20,21]. For example, researchers
studying Native Hawaiians have also concluded that many health promotion
programs failed because of their cultural inappropriateness [22].
Balancing the distrust are communities that strongly
support the need for research on issues that are of direct consequence
to their members [23]. These include community groups such as ACTUP
for AID/HIV research, promoting drug trials that include women, the
Breast Cancer Coalition, and Alzheimer's associations [24]. These
groups are using participatory research to both enhance the validity
of data, and to increase the capacity of communities to do their own
research [9 25,26].
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What is participatory research?
PR provides a framework from which to respond to health
issues within a social and historical context. This is in contrast
to approaches wherein health issues are framed only in clinical terms,
defining illness in relation to individual behavior [18 27, 28]. There
have been several succinct definitions of PR. The definition offered
by Green, et al. [5], cited in the box above, bears repeating, where
PR is "systematic inquiry, with the collaboration of those affected
by the issue being studied, for purposes of education and taking action
or effecting social change." Maguire defines PR as "a process of collective,
community-based investigation, education, and action" [29]. The Commission
d'étude sur les universités au Québec has defined PR as research undertaken
by scholars who, "joining theory with intervention, work with groups
outside of their institution, analyze with them the problems faced
by their community, help them to perceive these problems more clearly
and to take charge of the sectors that influence their collective
life." [30] These definitions encapsulate the key elements of PR:
research through collaboration, education and action [2,31,32], It
has been observed that "theory is one of the first casualties of academic-community
research collaboration," since researchers may downplay their knowledge
of theory so as not to appear elitist or to accommodate community
interests, if they are conflicting [33] Strauss and Corbin, among
others, counter this view with their grounded theory model, in which
theory is generated by the research process [34]. A comprehensive
review and critique of the various current theoretical approaches
to public health research and education has been compiled by Glanz
et al.[35]. What is important is that each approach, regardless of
the name, stresses the commitment to the researcher-community exchange
relationship and to social action [36].
In PR, the research process is as important as the
outcome [37]. PR is differentiated from other forms of research "in
the alignment of power within the research process", and characterized
by what McTaggart called "authentic participation" [38]. PR can break
down the rigid boundaries between those doing research and being researched
and thus affords all participants access to the production of knowledge.
Ideally in PR, community partners must be involved in the "way research
is conceptualized, practiced, and brought to bear on the life-world."
[38] In PR, the research problem is "identified, analyzed and acted
upon" [39] jointly by the researchers and the community [40]. Heaney
suggests that PR "is credible and legitimate when the action to which
it leads brings about better conditions for life. Period." [41].
There are several models of participatory research.
Small provides definitions of, and compares four 'action-oriented
research models': action research; participatory research; empowerment
research; and, feminist research [42]. For those who wish to conceptualize
the similarities and differences between these various models, Small's
article offers a useful critical comparison. The main point made by
the author is that there is more convergence than divergence between
the models, even though all evolved from different disciplinary roots
and historical doctrines. Other useful references include Susman and
Evered,[43] Israel et al,[44] and Hart and Bond [45]. According to
Smith et al, "When people form a group with a common purpose, investigate
their situation, and make decisions to take actions that re-form power
and create justice, their reality is transformed. In so doing, they
also are transformed-losing fear, gaining confidence, self-esteem,
and direction. This process of participatory action-research produces
knowledge based on experience: the wisdom of the people." [9 46,47].
It is important to recognize that there are different
'shades' of participatory research that are equally legitimate. The
participatory research approach can be applied to many forms of research48
and with varying degrees of intensity. The term usually defines research
inquiry which involves 1) some form of collaboration between researchers
and the researched, 2) a reciprocal process in which both parties
educate each other, and 3) a focus on the production of local knowledge
to improve interventions or professional practices [5 38]. The ultimate
goal is to assist research subjects to assume ownership of the research
process and to use the results to improve their quality of life [44].
Some authors argue that participatory research is a health-promoting
endeavor in itself [23].
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PR as an approach
PR is a research approach, philosophy or process:
at the core is the partnership between researchers and the community
(i.e., those being "researched") [31,49]. PR does not follow a restricted
and rigid research methodology. Drevdahl has described this as a "world
view about the conduct of research, rather than a linear, delineated
procedure for collecting evidence." [39]. A successful PR project
does not depend on specific methods of data collection or analysis.
PR does not replace other forms of research, nor is it characterized
by whether it uses qualitative or quantitative methods. Nevertheless,
as Cornwall and Jewkes observe, PR is often debated around the "quantitative-qualitative
divide" with critics regarding it as "soft" research and its proponents
claiming that it is a "panacea for problems besetting conventional
practice." [37]. Familiar qualitative and quantitative methods from
clinical and social sciences can be readily incorporated into the
PR process; seldom do PR projects use only a single method.
PR is most easily conducted with people who have a
well-developed consciousness of their community [50]. For this reason,
PR in the developed world is usually conducted among people who have
shared culture and common ties, including unions, women's organizations,
and American Indian/Alaska Native or First Nation communities [51].
Much of the PR literature concerns disempowered communities. PR, because
it does not rely solely on traditional power structures and works
within communities "vulnerable to colonization" [48], provides an
important opportunity for collaboration with disadvantaged social
groups. The collaborative process enhances the resilience that exists
in every community [2 52]. Participatory research can also include
individuals or groups that would not usually be considered communities
(e.g. groups of patients, individuals with a specific problem, family
groups, etc) [53]. Green et al noted that "over the last twenty years,
participatory research has addressed women's issues, the issues of
people with disabilities, and the health and economic issues of the
Aboriginal movement in Canada." [5] Researchers in areas as seemingly
disparate as National Aviation Space Agency (NASA) [54]. AIDS and
breast cancer activism, for example, are now adopting this process.
The PR approach has also been adopted by the Environmental Protection
Agency (EPA) for health research [55].
The recent philosophical trend towards collaborative
research can in part be traced to the increasing autonomy of Aboriginal
people around the world [32 52 56,57 58]. This trend has been reinforced
by forums on Aboriginal issues, such as the Royal Commission on Aboriginal
Peoples (1997) [59], the National Forum on Health (1997) [60], the
International Workshop on Ethical Issues in Health Research Among
Circumpolar Indigenous Populations (1995) [61], and the Report on
the National Workshop on Ethics of Research in Aboriginal Health,
Alice Springs, Australia (1986) [62].
All research involves a degree of participation. Much
conventional research allows only limited interactions with people,
while other models have a great deal of participation, but are not
really "participatory" in the sense of sharing power in decision-making
[63]. "Participation is a powerful but slippery concept," according
to Elden and Levin. They point out that there are different degrees
of participation: 'insiders' may be seen by some as source of data
only, but yet are still deemed to be 'participating' in the research
process. The authors argue, however, that only those who are "...co-creators
in each phase of knowledge generation ands interpretation..." are
full participants in the process [64]. Researchers and practitioners
who have been trained to consider themselves to have superior knowledge
and who have predominantly used a conventional research approach will
need to understand the issue of alignment of power if they are to
implement this policy. The major differences between the conventional
approach and the PR approach to research lie in the questions of who
defines the research problem, and who generates, analyzes, represents,
owns and acts on the information resulting from the research project.
This entails a shift in personal and professional attitudes of those
practicing conventional research regarding these questions. As more
researchers and practitioners in primary care come to understand and
accept the collaborative element of PR, they will also need to be
aware of the issue of trust and relationship building with the collaborating
communities. PR is a process of education, a continuous enhancement
of knowledge, skills and resources for all partners.
The steps of a participatory research project are outlined
succinctly in The Guidelines and Categories for Classifying Participatory
Research Projects in Health Promotion, developed for the Royal Society
of Canada, and appended to this document with permission. These steps
assist all partners to address the major issues in the research process.
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PR and Primary Care Research
Research strategies with explicit participatory elements
have recently gained respectability and credibility within mainstream
health research [37 65]. Participatory primary care research seeks
to include the community (ies) in every aspect of the undertaking,
from conceptualization to evaluation and dissemination [51 66]. At
its inception twenty-five years ago NAPCRG promoted the move to primary
care practice-based health research as an alternative to research
conducted largely in tertiary care university teaching hospitals.
Many researchers recognized that the mystique of research must be
dispelled not only for purposes of democratizing knowledge, but also
to ensure that research and its outcomes have the desired effect of
improving health [67, 68, 69].
Primary care research teams, frequently multidisciplinary,
are now expanding to include the community. Contextualization-acknowledging
and integrating the relevant patterns of social behavior-is also a
strategy to increase the validity of public health research by including
socio-cultural factors that influence disease or health service outcomes
[56 70]. Collaborative research increases the likelihood of long-term
sustainability of health programs, ensures cultural appropriateness,
promotes socioeconomic development, and transfers skills and knowledge
to the community [71]. Examples of PR within primary care research
include the introduction of a patient-centered clinical method at
the University of Western Ontario, Reason's study of physicians and
holistic health care [72] and Denz-Penhey and Murdoch's work with
chronic fatigue care [73] In Quebec a Mohawk community invited two
universities to form a partnership for the primary prevention of diabetes.
The resulting program has been taken over by the community [74,75].
Similarly, the current Alberta collaborative project on socio-cultural
factors affecting tuberculosis prevention and treatment [76] includes
several university departments, several Aboriginal health organizations
and a community-level training component wherein community members
will become skilled in evaluation techniques and data collection.
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PROCESS
Establishing partnerships
Participatory research ensures that the community
is an equal and active partner with the other stakeholders involved
in the study, e.g., university, corporations, or governments. The
knowledge and expertise of all collaborators are considered complementary.
A key element of participatory research involves developing realistic
expectations about what each group can and cannot contribute. Just
as participatory research enhances validity by including context,
so too is the validity of the research relationship enhanced if the
context of each partner is understood. The exercise of defining the
strengths, limitations and resources that can be brought together
contributes to the establishment of trust [77,78], and mutual respect
between researchers and community. In participatory research, the
research design and the data obtained are iteratively analyzed and
discussed by the research partners [40]. Projects are therefore under
on-going scrutiny, and subject to evaluation and revision as part
of the research process. Primary care researchers will observe the
similarity with the argument of Hueston and Mainmous (1996) in favor
of family medicine research. Practicing family physicians, they argued,
have an important place in research through (1) validating that the
issue under investigation is clinically relevant; (2) ensuring that
the results of the study will be applicable to a typical family practice;
and (3) providing a real life environment for the research that will
enhance its external validity [79]. In this way, research becomes
a way to more effectively improve health by building bridges between
research and application, academician and clinician, academia and
community. The goal is to dispel the classical expert/community dichotomy
[80].
Mittlemark [81] provides examples of partnerships that
can be established between academic researchers and communities. If
academic groups are senior partners, authority begins with them and
is gradually transferred to community groups [82]. When the community
is the senior partner, projects are designed and implemented by community
groups and the academic partner is contracted to assist with particular
problems. Finally programs with balanced partnerships occur when leadership
shifts back and forth depending on which group has expertise for a
particular problem. Full partnership takes time to establish and requires:
maturation of trust; development of vision, confidence, skills and
knowledge; and, a gradual shifting of balance and perspective through
genuine, respectful dialogue. It follows then that certain skills
and qualities are advantageous in this continuous process of negotiation
and compromise. John Collier, one of the originators of action research,
stated in 1945:
But let me emphasize that this kind of research makes
demands on the research worker that are far more severe than those
needed by the specialized and isolated kind. It requires of him [sic]
a more advanced and many-sided training, and in addition a type of
mind and personality which can sustain, in suspension, complex wholes,
and yet which can entertain-yes, and be drawn in and impelled by-human
values and policy purposes....[83]
Hagey [84], Hart and Bond [45], Israel et al [85],
Fawcett [86], and Sherman[87] all discuss attributes of researchers
and participants that contribute to harmony during the research process,
and to successful outcomes. These include: a high degree of political
awareness, and knowledge of one's own perspective; emotional stability-which
underlies a high degree of tolerance for complexity, unpredictability,
and conflict; excellent group process skills and commitment to equality
of relationships; and versatility.
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Education and capacity-building
By its very nature, PR is an impetus for change, by
relating knowledge to action[88]. First, community members become
equal partners in all aspects of the research, including any action
arising from the project. Second, it is a bi-directional education
process, in which researchers and the community learn from one another
and share expertise and knowledge. Third, PR is a process that is
interactive, and co-learning is a central feature of the process,
in contrast to the unidirectional model of outside researchers providing
education to the community members [89]. Fourth, PR focuses on concrete
problems. Finally, benefits must accrue to the community.[5 88 90].
The PR process is iterative; action and reflection
are intertwined in the evolving project [32]. Education occurs throughout
the entire PR process, but chiefly through what Freire calls the dialogic
method, whereby community members apply their insights and experiences
to problem solving [51]. Dialogue is undertaken to prepare for partnership
(capacity building), assess the needs and interests of all participants
(community, researchers, institutions, funding-agencies), establish
a dynamic relation between community needs and research strategies,
allow for on-going consideration of broader (or other) contexts, and
encourage on-going reflection by all participant [91, 92]. Goulet,
in his introduction to Freire's book, states: "If...one is to adopt
a method which fosters dialogue and reciprocity, one must first be
ideologically committed to equality, to the abolition of privilege,
and to non-elitist forms of leadership wherein special qualifications
may be exercised, but are not perpetuated." [93].
Encouraging people to think critically about their
surroundings puts social problems in a broader political, social and
economic context. Disadvantaged people tend to believe that their
oppression is their fault [94], a phenomenon that Paolo Freire calls
the "doctrine of personal culpability." [95] A central goal of the
PR process is the transfer of knowledge, which sets the community
on a course for autonomy [32 57]. PR becomes a means of fostering
action [32] by involving communities in formulating research questions,
collecting and interpreting the data, disseminating and implementing
the results.
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CONSIDERATIONS AND CHALLENGES
Ethical considerations
Just as research approaches have changed in the last
half of the twentieth century, the post war period has witnessed the
further articulation of ethical principles that govern research involving
humans. These principles continue to evolve in response to the technical
capabilities of science as well as to society's social and moral standards.
The three internationally recognized cornerstones of
ethical research are:
- respect for autonomy of the person;
- non-maleficence (to do no harm) and beneficence (to do good
to others);
- social justice. [96,97]
These principles emphasize the importance of informed consent,
open acknowledgement and assessment of the risks and benefits of
the research and the importance of protecting potentially vulnerable
people. [98]
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Codes of ethics
The initial development of research ethics concentrated
on the researcher's responsibility to individual research subjects.
Current approaches address the additional challenge of meeting the
ethical needs of researchers, individuals and communities [54 99,100].
The Council of International Organizations of Medical Sciences (CIOMS)
states that "the community to be studied should be represented in
the review process ... it should not be considered that lack of formal
education disqualifies community members from joining in constructive
discussion on issues relating to the study and application of its
findings." [101]. In recent years institutions, professional organizations,
local groups and communities have developed their own ethical codes
to incorporate community needs into their broad research guidelines
[74]. The draft of the new Canadian Tri-Council policy statement on
Ethical Conduct for Research Involving Humans recommends a participant
centered approach to research and recognizes that differences exist
in the ethics of research undertaken with defined communities [102].
These developments indicate that researchers must now
consider whether it is appropriate for an Institutional Review Board
(USA), Ethical Review Board (in Canada), Human Subjects Committee,
etc, to judge the suitability of a research project that involves
a community, if that project does not involve the community's participation
and input. The establishment of ethics review bodies is sound; the
question is the current nature of the review process.
Experience has shown that participatory research is
strengthened by ethical guidelines and written agreements to ensure
the sharing of leadership, power and decision making from design to
dissemination of results [103,104]. Every participatory research project
is unique and the collaborating parties should jointly negotiate ethical
guidelines before research commences. These guidelines, written at
the appropriate literacy level [105], will identify the issues, maximize
close collaboration between researchers and the community, and reflect
local culture, needs and interests.
Experts in participatory research [5], national organizations
[106], universities[107], professional groups [108] and Native organizations
[22 109,110,111,112] have developed ethical guidelines and checklists.
These documents identify principles and obligations for the four phases
of a research project: design, implementation, data analysis and interpretation,
and dissemination of the results.
The front-line collaborators from each setting-for
example academicians and members of a community-together develop a
research agenda. These people, however, are not negotiating so much
on behalf of, but in consultation with the institutions they represent.
The standards and principles of these institutions will guide them.
The ethical and procedural issues to be successfully negotiated include:
the roles and responsibilities of each collaborator (including researchers
and community representatives), the desired outcomes of the research,
measures of validity, control of the use of data, control of funding,
and the channels/mode of dissemination of the research findings. The
outcome of this process is a working relationship based on an articulated
set of research questions that is acceptable to all of the research
partners; a task that can appear quite daunting at the start of any
collaborative research effort. The roles and responsibilities of team
members may shift during the research project, a potentially sensitive
prospect that can best be managed in an established atmosphere of
trust and mutual respect. Another important outcome is capacity building
of all partners as collaborators, including training, enhanced infrastructure,
control of data collection and storage, a stronger receptivity to
collaboration by researchers, and a stronger community voice in policy
design[113]. Sustained capacity-building efforts cannot be undertaken
in a piecemeal fashion.
Discussion of all the results with the community allows
for joint interpretation of the data, and modification if necessary
before dissemination. These steps strengthen the cultural and final
validity of the results, minimize harm (i.e. both outsider stigmatization
of individuals and the community and self-stigmatization) and encourage
community education and autonomy. Dissemination of the results includes
oral and written presentations in the final report in the both the
lay and scientific press as well as the media.
There are many examples where health researchers retained
full control or only involved the community at a superficial level.
Lack of community involvement has been particularly obvious at the
time of scientific publication. In reaction to this some communities
have requested veto power for all or part of the publication process,
or if necessary, requested that, reports go only to the funding agency
[111 114,115]. A alternative solution is that the variant viewpoints
be included in reports/publications [74]. Researchers should avoid
unilateral decisions, which may inadvertently be ethnocentric [15],
and be cognizant of the fact that ethical principles espoused by communities
may adopt a different emphasis from those embraced by the traditional
research community [116]. For example, the principle of respect for
autonomy of the individual may, in some Aboriginal communities, be
of lesser importance than respect for autonomy of the community as
a whole. Based on his experience with Aboriginal peoples in Ontario,
Brant discusses four principles that he believes are embedded in those
groups: non-interference; non-competitiveness; emotional restraint;
and, sharing [117]. It is therefore extremely important that researchers
familiarize themselves as thoroughly a possible with the cultural
norms of the communities with whom they intend to collaborate.
Therefore consensus should be negotiated for:
- the research goals and objectives;
- the methods and duration of the project;
- how community members can be partners on the research team;
- degree of confidentiality;
- strategy for evaluation process;
- interpretation and control of data, knowledge of where data
is filed, current and future use of the data and human biological
material;
- responsibility for resolving issues arising from the research;
- if and how new researchers can be incorporated into an existing
team; and
- joint dissemination of the results in lay and scientific terms
to both the communities and the scientists.
ACKNOWLEGEMENTS
Many people have graciously taken time to review this
document and offer suggestions and criticism. Among those who have
contributed their time and expertise are:
A Adelman, C Ballew, J Borkan, K Borre, AJ Cave, M
Carew, P Cochran, M Daniel, MJ DuBois, B Ewigman, G Feldberg, WL Freeman,
G Gibson, T Gilbert, A Gillies, K Gjeltema, K Glass, I Grava-Gubins,
LA Green, LW Green, T Greenhalgh, S Gryzbowski, K Guthrie, J Haggerty,
N Hansel, S Harris, CP Herbert, M Holiday, K Kandola, AL Kinmonth,
M Labrecque, EB Leibow, M Malus, LM Marquez, B Masuzumi, LH Miike,
W Miller, W Norcross, P Nutting, G Paradis, A Pasternak, D Pathman,
W Phillips, J Reading, L Potvin, A Schofield, SM Shinagawa, T Stephens,
M Stewart, S Tatemichi, K Travers, L Voakes, J Ward, C Weijer, P Woolfson,
D Wrightson.
We gratefully acknowledge The Royal Society of Canada
and the authors, LW Green, MA George, M Daniel, CJ Frankish, CJ Herbert,
WR Bowie, M O'Neill, for permission to include The Guidelines and
Categories for Classifying Participatory Research Projects in Health
Promotion as an appendix. We would also like to thank the graduate
students in PHS 540 at the University of Alberta, who critiqued the
document and contributed to the references, especially S Barnsley,
S Hulme, L Marquez, J Mignone, K Patzer; and special thanks to M Turnbull
who checked and formatted the many valuable references.
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APPENDIX
STUDY OF PARTICIPATORY RESEARCH IN HEALTH PROMOTION
Guidelines and categories for classifying participatory
research protocols in health promotion
Instructions
The following guidelines can serve to appraise the
extent to which research projects align with principles of participatory
research.
For each guideline, check only one box. Some of the
guidelines may not be applicable to the research project, in which
case no boxes should be checked, or boxes labeled "Not Applicable"
should be added to all the guidelines for users to check when appropriate.
The categories identified by boxes for most guidelines increase in
appropriateness to participatory research from left to right, but
the most appropriate level for some projects on some guidelines might
be more toward the middle or even to the left of the row of boxes.
Guidelines
-
Participants and the nature of their involvement:
(a) Is the communityb of interest clearly described or defined?
- no description
- inexplicit/general
- description
- general description but explicit
- general/detailed description
- detailed description
(b) Do members of the defined community participating in the research
have concern or experience with the issue?
- no concern or experience with the issue
- little concern or experience with the issue
- moderate concern or experience with the issue
- much concern or experience with the issue
- high concern or experience with the issue
(c) Are interested members of the defined community provided opportunities
to participate in the research process?
- no opportunity to participate
- little opportunity to participate
- more than one opportunity to participate
- several opportunities to participate
- many opportunities to participate
(d) Is attention given to barriers to participation, with consideration
of those who have been under-represented in the past?
- no attention to offsetting barriers
- low degree of attention to offsetting barriers
- moderate degree of attention to offsetting barriers
- moderate/high degree of attention to offsetting barriers
- high degree of attention to offsetting barriers
(e) Has attention been given to establishing within the community
an understanding of the researchersc commitment to the issue?
- no attention to the researchers' commitment
- low attention to the researchers' commitment
- moderate attention to the researchers' commitment
- high attention to the researchers' commitment
- explicit agreement on the researchers' commitment
(f) Are community participants enabled to contribute their physical
and/or intellectual resources to the research process?
- no enabling of contribution from participants (researchers
do it all)
- mostly researcher effort; some support for contribution
from participants
- about equal contributions from participants and researcher
- mostly resources and efforts of participants; researchers
have some direct input
- full enabling of participants' resources (researchers act
only as facilitators)
-
Origin of the research question:
(a) Did the impetus for the research come from the defined community?
- issue posed by researchers or other external bodies
- impetus originated mainly from researchers; some input from
community
- impetus shared about equally between researchers and community
- impetus originated mainly from community; some impetus from
researchers
- issue posed by the community
(b) Is an effort to research the issue supported by members of
the defined community?
- support for research from very few, if any, community members
- less than half of the community supports research on this
issue
- community is roughly divided on whether the issue should
be researched
- more than half of the community supports research on this
issue
- support for research from virtually all community members
-
Purpose of the research:
a) Can the research facilitate learning among community participants
about individual and collective resources for self-determination?
- no provision for learning process
- low provision for learning process
- moderate provision for learning process
- moderate/high provision for learning process
- high provision for learning process
(b) Can the research facilitate collaboration between community
participants and resources external to the community?
- no potential for collaboration
- low potential for collaboration
- moderate potential for collaboration
- moderate/high potential for collaboration
- high potential for collaboration
(c) Is the purpose of the research to empower the community to
address determinants of health?
- purpose devoid of empowerment objective
- low priority empowerment objective
- moderate priority empowerment objective
- moderate/high empowerment objective
- high priority empowerment objective
(d) Does the scope of the research encompass some combination
of political, social and economic determinants of health?
- no consideration of political, social or economic determinants
- only one or two determinants are considered
- limited consideration of combined determinants of health
- moderate consideration of combined determinants of health
- comprehensive consideration of combined determinants
-
Process and context-methodological implications:
(a) Does the research process apply the knowledge of community
participants in the phases of planning, implementation and evaluation?
- no use of community knowledge in any phase
- use of community knowledge in one or two phases only
- limited use of community knowledge in all three phases
- moderate use of community knowledge in all three phases
- comprehensive use of community knowledge in all three phases
(b) For community participants, does the process allow for learning
about research methods?
- no opportunity for learning about research
- low opportunity for learning about research
- moderate opportunity for learning about research
- moderate/high opportunity for learning about research
- high opportunity for learning about research
(c) For researchers, does the process allow for learning about
the community health issue?
- no opportunity for learning about the community issue
- low opportunity for learning about the community issue
- moderate opportunity for learning about the community issue
- moderate/high opportunity for learning about the issue
- high opportunity for learning about the community issue
(d) Does the process allow for flexibility or change in research
methods and focus, as necessary?
- methods and focus are pre-determined; no potential for flexibility
- mostly pre-determined methods and focus; limited flexibility
about equal blend of pre-determined methods and focus with
flexibility
- high flexibility; some pre-determined methods and focus
- complete flexibility; methods and focus not predetermined
(e) Are procedures in place for appraising experiences during
implementation of the research?
- no procedures for appraising experiences
- few procedures for appraising experiences
- some procedures for appraising experiences
- many procedures for appraising experiences
- comprehensive procedures for appraising experiences
(f) Are community participants involved in analytic issues: interpretation,
synthesis and the verification of conclusions?
- no involvement of participants in any analytic issue
- involvement in one or two analytic issues only
- limited involvement of participants in all three analytic
issues
- moderate involvement of participants in all three analytic
issues
- comprehensive involvement all three analytic issues
-
Opportunities to address the issue of interest:
(a) Is the potential of the defined community for individual and
collective learning reflected by the research process?
- research process not aligned with potential for learning
- limited alignment of research process with potential for
learning
- moderate alignment of research process with potential for
learning
- moderate/high alignment of research process with potential
for learning
- comprehensive alignment of research process with potential
for learning
(b) Is the potential of the defined community for action reflected
by the research process?
- research process not aligned with potential for action
- limited alignment of research process with potential for
action
- moderate alignment of research process with potential for
action
- moderate/high alignment of research process with potential
for action
- comprehensive alignment of research process with potential
for action
(c) Does the process reflect a commitment by researchers and community
participants to social, individual or cultural actions consequent
to the learning acquired through research?
- no commitment to action beyond data collection and analysis
and writing report for funding agencies
- low commitment to social actions based on learning through
research
- moderate commitment to social actions based on learning
through research
- moderate/high commitment to social actions based on learning
through research
- comprehensive commitment to social actions based on learning
through research
-
Nature of the research outcomes:
(a) Do community participants benefit from the research outcomes?
- research benefits researchers or external bodies only
- research benefits researchers/ external bodies primarily;
community benefit is secondary
- about equal benefit of research for both researchers/external
bodies, and community
- research benefits community primarily; benefit is secondary
for researchers/ external bodies
- explicit agreement on how the research will benefit the
community
(b) Is there attention to or an explicit agreement for acknowledging
and resolving in a fair and open way any differences between researchers
and community participants in the interpretation of the results?
- no attention to or any agreement regarding interpretation
issues
- low attention to interpretation issues
- moderate consideration of interpretation issues
- high attention to interpretation issues; no explicit agreement
- explicit agreement on interpretation issues
(c) Is there attention to or an explicit agreement between researchers
and community participants with respect to ownership of the research
data?
- no attention to or any agreement regarding ownership issues
- low attention to ownership issues
- moderate consideration of ownership issues
- high attention to ownership issues; no explicit agreement
- explicit agreement on ownership issues
(d) Is there attention to or an explicit agreement between researchers
and community participants with respect to the dissemination of
the research results?
- no attention to or any agreement regarding dissemination
issues
- low attention to dissemination issues
- moderate consideration of dissemination issues
- high attention to dissemination issues; no explicit agreement
- explicit agreement on dissemination issues
SOURCE: L.W. Green, M.A. George, M. Daniel, C.J. Frankish,
C.P. Herbert, W.R. Bowie, M. O'Neill, Study of Participatory
Research in Health Promotion. Royal Society of Canada, Ottawa,
Ontario, 1995, pp 43-50. Reproduced with the kind permission of
the Royal Society of Canada and the authors.
Back To Top
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a. Within this document the term participatory research
(PR) implies an overall approach, including variations such as action
research, participatory-action research, advocacy research, empowerment
or emancipating research.
b. The term community is defined in this context as
any group of individuals sharing a given interest; this definition
includes cultural, social, political, health and economic issues that
may link together individuals who may or may not share a particular
geographic association. This definition also includes the traditional
concept of community as a geographically distinct entity.
c. The term community is defined in this context as
any group of individuals sharing a given interest; this definition
includes cultural, social, political, health and economic issues that
may link together individuals who may or may not share a particular
geographic association. This definition also includes the traditional
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NAPCRG Policy Statement, November 6, 1998
