Responsible research with communities: participatory research in primary care

Responsible research with communities: participatory research in primary care

Involving communities: a policy statement on participatory research

Definitions of 'expert knowledge' in primary health care are changing. Current developments in ethics and research methods call for more participation of individuals and communities in research. This policy statement from the North American Primary Care Research Group (NAPCRG) describes the process of creating collaborative research projects that include all parties involved in primary heath care. Its recommendations reflect a commitment to the Participatory Research (PR) approach that ensures active recognition of all partners.

The documents sets out the rationale for a PR approach, describes what it involves and how it fits with research in the field of primary heath care. The authors describe the PR research process, which involves establishing equal partnerships and a commitment to education and capacity building. The document also sets out areas for consideration and key challenges, including ethical questions about how to address complexity, resolve conflicts and measure success.

Participatory research strategies have their roots in development ideologies of the 1960s and '70s. They provide a framework from which to respond to health issues within a social and historical context. Key features include the following:

  • participatory primary care research seeks to include the community in every aspect, from conceptualisation and design to evaluation and dissemination;
  • PR ensures that the community is an equal and active partner with the other stakeholders involved in a study;
  • PR links knowledge to action in a continuous two-way learning process.As such, it is an impetus for change;
  • PR projects are strengthened by ethical guidelines and written agreements.Guidelines have been developed for all stages of the research process;
  • the effects of potential conflicts can be mitigated by awareness of the possibility of shifts in objectives, agendas and allegiance. Ultimately, all participants have the right to withdraw and a project may be stopped for many reasons;
  • PR is successful if all parties are satisfied with the process and the outcomes. Success will be measured at the individual, community and institutional levels, using criteria established jointly and separately by the participants.

The authors state that commitment to PR principles by NAPCRG will promote responsible collaboration with communities, and so will improve the health of individuals, families and communities. They recommend that NAPCRG:

  • endorse a number of ethical principles governing participatory research;
  • adopt a set of specific guidelines for creating research agreements;
  • promote ethical research by encouraging researchers to (a) give communities the opportunity to respond to findings, and (b) acknowledge the contributions or conflicting views of community members;
  • adopt criteria which promote participatory research, encourage its adoption by other primary care organisations and advocate for PR at funding level;
  • develop resources and support services to promote capacity development in participatory research.
  1. How good is this research?

    Assessing the quality of research can be a tricky business. This blog from our editor offers some tools and tips.