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NAPCRG Policy Statement, November 6, 1998

TABLE OF CONTENTS

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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