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Responsible Research with Communities:
Participatory Research in Primary Care

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The document, "Responsible Research with Communities: Participatory Research in Primary Care," has grown out of the successful workshop on Respectful Research With Communities presented at the 1996 NAPCRG Annual Meeting in Vancouver. The NAPCRG membership and Board of Directors supported continued development of this document. The Task Force has solicited comments from all interested parties and incorporated many suggestions into their revisions. This final document was accepted as a policy statement on participatory research at the NAPCRG Annual Membership Meeting in Montreal, November 4-7, 1998.

See a related article in the British Medical Journal. Macaulay AC, Gibson N, Freeman W, Commanda L, McCabe M, Robbins C, Twohig P. For the North American Primary Care Research Group. Participatory Research Maximises Community and Lay Involvement. BMJ 1999;319:774-8.

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NORTH AMERICAN PRIMARY CARE RESEARCH GROUP

Responsible Research with Communities: Participatory Research in Primary Care

A Policy Statement

Contributors:

Ann C. Macaulay (Chair): Associate Professor, Department of Family Medicine, McGill University;  Laura E. Commanda: Policy Advisor, HIV/AIDS Policy Coordination and Programs Division, Health Promotion and Programs Branch, Health Canada; William L. Freeman: Director, Research Program, Indian Health Service; Nancy Gibson (Editor): Chair, Department of Human Ecology, University of Alberta; Melvina L. McCabe: Associate Professor, University of New Mexico; Carolyn M. Robbins: Community Advocate, Albuquerque, New Mexico; Peter L. Twohig: Research Associate, Dept. of Family Medicine, Dalhousie University, Halifax, Nova Scotia; North American Primary Care Research Group (NAPCRG): 11400 Tomahawk Creek Parkway, Suite 540, Leawood, Kansas.

The views in this paper do not necessarily represent the views of Health Canada, Canada, or of Indian Health Service, USA.

Executive Summary

The document, "Responsible Research with Communities: Participatory Research in Primary Care," together with the recommendations for NAPCRG, was adopted as organizational policy, by the NAPCRG Board of Directors and membership at the NAPCRG Annual Meeting on  November 6, 1998 in Montreal.  This document grew out of a successful workshop on Respectful Research With Communities  at the 1996 NAPCRG Annual Meeting.  The NAPCRG membership and Board of Directors supported and financed development of this document. The Task Force solicited comments from interested parties and incorporated many suggestions into the revisions.

The PR approach, which has its roots in various liberation movements of the last two decades, increases the voice of communities in identifying health issues. PR enhances the relevance and validity of health research by ensuring that the social, cultural and economic conditions of the community are included. PR ensures that communities share in selecting and designing research projects, gain skills during the research process, share in the reporting, and are in a position to use the results for their future health care planning.

This document describes the process of creating collaborative research projects that include all parties: academics, physicians, community members, government agencies and other relevant players. All partners are considered experts with complementary knowledge and skills.

The first step in participatory research is to develop a strategy that defines the level of collaboration in all stages of a project from design to dissemination of the results. The strategy may be a formal document or code of ethics that guides the research process. Common goals, desired outcomes, potentially sensitive issues such as ownership of research data, and strategies for managing sensitive results to the communities as well as to scientific forums, will be identified by the entire research team.

Participatory research can require a considerable time commitment from all collaborators. The outcome, however, is often health information that is more relevant and accessible to the community. This can lead to community-activated and sustained health programs that address important health problems. A PR project is considered successful if all collaborators are satisfied with the research process and the results.

The recommendations to NAPCRG reflect a commitment to the PR research approach that ensures formal and active recognition of all partners throughout the research process. NAPCRG will play a proactive role in providing guidance regarding PR to both professionals and interested communities. The overall goal is to increase knowledge of a process that can be applied, when appropriate, to achieve successful collaboration with communities.

TABLE OF CONTENTS

9-25-1998; 5-12-1999

NAPCRG Policy Statement, November 6, 1998
NAPCRG Administrative Office:
11400 Tomahawk Creek Parkway, Ste 540, Leawood, KS 66211
Phone: 888-371-6397 or 913-906-6000
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