Participatory research: What is the history? Has the purpose changed?

For this article, I have chosen to follow others and to use the term participatory research (PR) ‘as an umbrella term for a school of approaches that share a core philosophy of inclusivity and of recognizing the value of engaging in the research process (rather than including only as subjects of the research) those who are intended to be the beneficiaries, users, and stakeholders of the research. Among the approaches included within this rubric are community-based participatory research, participatory rural appraisal, empowerment evaluation, participatory action research, community-partnered participatory research, cooperative inquiry, dialectical inquiry, appreciative inquiry, decolonizing methodologies, participatory or democratic evaluation, social reconnaissance, emancipatory research, and forms of action research embracing a participatory philosophy’ (1). PR finds its origins in both social action research and emancipatory philosophy; frequently described as emerging from ‘northern’ and ‘southern traditions’. In the ‘northern tradition’, Kurt Lewin in the 1940s working in both the USA and the UK, proposed a cycle of continuous inquiry, action and evaluation, undertaken with or by—as opposed to on or for—society’s marginalized peoples. Lewin’s action research promoted empowerment and social equity: it ‘needs the best of what the best among us can give and the help of everybody’ (2). This was followed by Argyris (3) and others who expanded these early concepts and applied them to promote organizational efficiency. The ‘southern tradition’ of emancipatory theory and practice questioned the values of research and education in relation to political power and oppression. In 1970, Paulo Freire from Brazil in Pedagogy of the Oppressed posited (4) individuals not as empty vessels and objects of inquiry, but as full participants in inquiry, able to determine their own needs in order to improve their own lives. Researchers and international organizations, including UNESCO and the World Bank, used Freire’s ideas to work with disenfranchised communities to generate evidence to force policy changes and to acquire much needed funding. In these years, the research under community leadership was often qualitative with limited academic involvement. It was from these community needs that PR became (wrongly) seen as a qualitative method and also criticized for being less rigorous or ‘soft’. In the 1980s, in North America, various agencies including Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration provided research and evaluation programs with early community collaboration and partial alignment with the principles of PR. In 1984, the US Congress provided significant funding to CDC to fund Prevention Research Centers (PRC) for increased collaboration between researchers with policy makers and citizen groups, which became a nation-wide network (5). In the mid-1990s, the CDC commissioned the Institute of Medicine (IOM)—renamed National Academy of Medicine in 2015—to review the PRCs. The committee chaired by Lawrence W Green, director of an early PRC, recommended the organizations should all ‘adopt a community-based participatory approach’. As a result, all PRCs developed community-based advisory boards consisting of community members, volunteers, health and educational professionals, with local and state policy makers. Also, new CDC funding supported urban research centres with some participatory approaches, the National Institute of Environmental Health Sciences became the first NIH institute to support PR, and the Robert Wood Johnson Foundation added PR to their clinical scholars training (6). The fundamental principles of PR became equitable co-ownership and co-decision making with full partner engagement with academic researchers, locating power and ownership at every stage of the research process, or however the individual teams decided was equitable. PR was no longer considered a method but an approach to research and the methods used were those of all research: quantitative, qualitative or mixed methods. Significant public health leaders included Barbara Israel, Meredith Minkler and Nina Wallerstein, who remain very active today authoring comprehensive textbooks on PR in health. They all argued for high PR standards, combined with rigorous research knowing that poor research is unacceptable and certainly does not benefit either academics or their partners—including communities. In a 1998 seminal review, Barbara Israel et al. outlined the eight key component of PR with communities; recognizes community as a unit of identity; builds on strengths and resources within the community; facilitates collaborative partnerships in all phases of the research; integrates knowledge and action for mutual benefit of all partners; promotes a co-learning and empowering process that attends to social inequalities; involves a cyclical and iterative process; addresses health from both positive and ecological perspectives; and disseminates findings and knowledge gained to all partners (7). In contrast, other researchers eager for funding began to describe their projects as participatory—although in practice many were just talking with communities or running a few extra focus groups—and absolutely not developing community partnerships. In 1995, Lawrence W Green based in Canada led a literature review and survey of PR projects to develop PR guidelines (8) that certainly helped to evaluate the level of partnerships. In 2008, based at CDC, his team of Mercer, Green et al. expanded and reliability-tested these guidelines to provide a tool for funding agencies and peer reviewers to evaluate the partnerships in grant applications and to assist researchers and non-academic partners in strengthening their projects (8). New national organizations including Community Campus Partnerships for Health (9) founded by Sarena Seifer offered PR training, ethical guidelines for partnership research (i.e. who owns/has access to the data in a partnership?), peer recognition of research outcomes other than scientific articles, i.e. policy changes and health promoting videos, and expertise to universities to change promotion and tenure guidelines to recognize these important knowledge translation activities. In the early 1990s, PR started to be adopted by health care researchers, with some of the first adoptees being those in primary health care. The North American Primary Care Research Group (NAPCRG), which has many international members, played a major role. Many of the first primary health care participatory researchers were also family physicians practicing in Indigenous communities in North America, who understood the frustrations of Indigenous people being ‘researched to death’ through ‘helicopter research’. This derogatory terminology described researchers who parachuted into communities with their own agendas, gathered material, disappeared and published their papers without sharing results with the communities. To address this problem, the American Indian Law Center developed ethical principles that outlined how individuals and communities should participate as partners in the research process in order for individuals and communities to benefit. In 1996, Carol Herbert organized a NAPCRG preconference workshop titled ‘Responsible Research with Communities’. Many presenters—but not all—were Indigenous and non-Indigenous researchers working in partnerships with Indigenous communities. Some attendees felt it important to capture the resulting rich discussions and recommendations for promoting equitable research partnerships, and the resulting document was adopted by NAPCRG as their 1998 Policy Statement on Responsible Research with Communities (10) and also incorporated into a critical review published by the BMJ (11). NAPCRG was the first high-level research organization to adopt a policy promoting PR. Even with these accomplishments, those of us promoting PR still felt we were swimming against a very strong tide and continued to hear criticisms that PR lacked rigor of classic researcher driven ‘top down’ epidemiological research. PR received big boosts in the early 2000s when the US Institute of Medicine (now the National Academy of Medicine) issued two publications promoting this research approach (12,13), the Journal of Internal Medicine printed a special issue dedicated to community-based participatory research (CBPR) with the editorial stating ‘we need to do a better job of articulating CBPR to our peers and colleagues as “research-plus” that is both methodologically rigorous and that makes unique contributions not possible using other means’ (14) and the Agency of Healthcare Research and Quality commissioned a review seeking the benefits of PR. This 2004 review concluded that there were insufficient completed studies to achieve full evaluation of PR and that projects with the strongest designs were most beneficial to the communities (15). Since the early 2000s, there is ever increasing acknowledgement in many countries that PR strengthens academic–community relationships; ensures relevancy of research questions; increases capacity of data collection, analysis and interpretation; minimizes the negative or stigmatizing effects of research on the partners; and enhances program recruitment, sustainability and extension. A seminal review of PR in public health documented that PR promotes social justice and supports knowledge translation and self-determination (1), and PR is believed to increase communities’ capacity to identify and solve their problems and decision-makers’ and service providers’ ability to mobilize resources, improve policies and enhance professional practices. Taking a PR approach results in increased capacity of community members and researchers, productive conflicts followed by useful negotiation, increases the quality of outputs and outcomes over time, increases the sustainability of project goals beyond funded time frames and during gaps in external funding and creates system changes and new unanticipated projects and activities (16). Many projects last one to two decades by a ‘ripple effect’ of building subsequent phases on their earlier successes (17). PR research furthermore integrates knowledge translation into the knowledge creation process, provided the appropriate end users of the results are implicated throughout all key phases of the research and are well placed to use results to implement changes (18). The majority of projects have been local, but there are now also excellent multisite PR projects linked by overarching academic-community boards (19) and successful large randomized controlled trials incorporating major community decision-making (20). As a result of these positive outcomes, many national and international granting agencies are requiring research partnerships not only with communities and community organizations but also with patients, policy makers, health professionals and health organizations, i.e. INVOLVE in the UK, Patient Centered Outcomes Research Institute (PCORI) in the USA and the Canadian Institutes of Health Research. New international organizations include the International Collaboration for Participatory Health Research (PHR) that seeks ‘to bring together systematically the knowledge and experience of PHR in different countries for the purpose of strengthening PHR regarding issues of quality, credibility, and impact on policy and practice’ (http://www.icphr.org/). These are finally exciting times for all forms of partnership research! Recognition! Funding! And major challenges remain! The terminology is vast and confusing arising from the long evolution of PR from different countries, disciplines and with different research goals. The terminology continues to grow with the added focus on knowledge translation and the newer terms of community and patient engagement. There is a significant need for conversations regarding taxonomy and terminology, which would hopefully lead to clarity and even agreement. I believe that there are many shared commonalities and that each partnership is unique based on the individual levels of expertise, strengths and weaknesses of all team members and the overall goals. Each team needs to develop their own decision-making process and co-governance, and there is overriding need for academic humility for researchers to recognize how their research skills can contribute but not dominate a partnership. Other major needs include increased rigorous PR reviews to document the benefits and pitfalls, to increase the understanding of how to maximize the design to accomplish the goals and translate findings into action and innovation; capacity building for all team members—including academics and policy makers; incorporation of partners for developing team guiding principles/ethical guidelines, as authors and for grant reviewers and journal submissions. Training is also needed for journal editors and ethics boards; guidance for authors on how to include the key partnership elements in their articles to better enable systematic reviews, changes in university promotion and tenure guidelines to recognize the additional time required for all the partnership meetings and the very varied—and often very significant—outcomes in addition to scientific publications; and the need for infrastructure funding for projects based outside of universities. With increased understanding of all research based on the principles of PR and significant interest from funding agencies, this is an ideal time to move forward with the current agenda. PR origins were grounded in increasing social justice by promoting voice to disadvantaged populations and to promote research with and not on or about or for individuals and communities. In this process, the perceptions of many researchers changed to recognize community strengths and realities, and they became very committed to securing ongoing funding to maintain long-term partnerships. As engagement funds increase, are there are risks that researchers will apply for their own benefit or solely to co-opt patients to increase enrolment or response rates? Will researchers develop equitable partnerships? What will happen to partnerships at the end of a grant? In primary health care, NAPCRG continues to provide leadership through their updated 2015 Policy Statement on Participatory Research (21) and their recommendations for future developments (21). NAPCRG ‘walks the talk’ as it now includes patient and community representatives as board members and as reviewers for abstracts and conference presentations. We challenge other organizations to follow NAPCRG’s example! With a PCORI grant led by J Westfall for Patient and Clinician Engagement NAPCRG has committed ‘to develop a robust community of patients and primary care providers with knowledge and understanding of the unique features of patient-centred outcomes research related to primary care’ (22). This new cadre of patients and primary health care providers, in addition to those with expertise in long-term relationships with a variety of community members, community organizations and policy makers, will be well positioned to help to guide the adherence to the principles and future evolution of PR. Funding: departmental resources. Ethical approval: none. Conflict of interest: none.