Responsible
Research with Communities:
Participatory Research in Primary Care
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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To Table Of Contents
NORTH
AMERICAN
PRIMARY CARE RESEARCH GROUP
Responsible
Research with Communities:
Participatory Research in Primary Care
A Policy
Statement
Contributors:
Macaulay AC (Chair), Commanda LE, Freeman WL, Gibson N (Editor), McCabe ML, Robbins
CM, Twohig PL.
Ann
C. Macaulay: Associate Professor, Department of Family Medicine, McGill University,
SMBD Jewish General Hospital, 3755 Cote Ste Catherine, Montreal, Quebec H3T 1E2,
Canada. Email: ann.macaulay@mcgill.ca
Laura E. Commanda: Policy Advisor, HIV/AIDS Policy Coordination and Programs
Division, Health Promotion and Programs Branch, Health Canada, Jeanne Mance 1918
B1, Tunney's Pasture, Ottawa, Ontario K1A 1B4, Canada. Email: Laura_Commanda@hs-sc.gc.ca
William
L. Freeman: Director, Research Program, Indian Health Service, Public Health
Service, 5300 Homestead Road NE, Albuquerque, New Mexico 87110-1293, USA. Email:
william.freeman@mail.ihs.gov
Nancy
Gibson: Chair, Department of Human Ecology, 3-02 Human Ecology Building, University
of Alberta, Edmonton, Alberta T6G 2N1, Canada. Email: nancy.gibson@ualberta.ca
Melvina
L. McCabe: Associate Professor, University of New Mexico, Department of Family
and Community Medicine, 2400 Tucker Ave NE, Albuquerque, New Mexico 87131, USA.
Email: mlmccabe@unm.edu
Carolyn
M. Robbins: Community Advocate, 2400 Rio Grande Blvd NW #1-138, Albuquerque,
New Mexico 87104-3243, USA. Email: cmrobbins@worldnet.att.net
Peter L. Twohig: Research
Associate, Dept. of Family Medicine, Dalhousie University, 8th Floor, Abbie J.
Lane Bldg, 5909 Jubilee Road, Halifax, Nova Scotia B3H 2E2, Canada. Email: twohig1@is.dal.ca
North
American Primary Care Research Group (NAPCRG): PO Box 8729, Kansas City, MO
64114, USA, Email: napcrg@stfm.org, "http://views.vcu.edu/napcrg/napcrg.html"
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
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