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NAPCRG Policy Statement, November 6, 1998 - page 3

TABLE OF CONTENTS

Validity in PR

Some researchers, conditioned by the traditional science paradigm [43], are concerned that the PR approach implies a less rigorous methodology which could lead to less valid results. However, participatory research enhances validity by broadening the base for data collection and inclusion of contextual factors. Content validity is achieved in the depth and variety of data collected. Construct validity relates to the degree to which the research is guided by a theoretical framework. Reliability is measured by triangulation of data from more than one source and the rigor with which analysis and interpretation are undertaken [140]. Successful research is not only measured by the production of generalizable knowledge, however. PR is also measured by cultural validity, an assessment of relevance and consistency with the cultural framework in which the research in conducted. This includes the immediate usefulness of the research to the local community, through enhancing resources for community-based problem solving.[141,142].

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CONCLUSION: PARTICIPATORY RESEARCH AND NAPCRG

Participatory or collaborative research is aligned with NAPCRG's goals. NAPCRG supports the concept of collaboration and the utilization of participatory research for the benefit of communities and researchers. We acknowledge the PR experience of other disciplines (social science, business, nursing, agriculture, education and anthropology) and the value of a multi-disciplinary approach. As experienced primary care researchers, we recognize that the initial research question may arise from the community or the researchers, and that the research process can be negotiated to address all relevant agendas. We value the equal, trustful, and respectful partnerships between the various communities and researchers, a relationship that begins with the formulation of the research question (s). We also believe that the elements of the research process: 1) the generation of the research question, 2) the conduct of the study, 3) the analysis and conclusions, and 4) the dissemination of the results, can and must be developed in full partnership. Commitment to these principles by NAPCRG will promote responsible collaboration with communities, which in turn will improve the health of individuals, families, and communities.

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RECOMMENDATIONS

It is recommended that NAPCRG promote and conduct responsible research with communities by undertaking the following program of action:

  1. Endorse the following ethical principles governing participatory research:
    • All participating partners must have a true desire to collaborate;
    • All partners are considered experts;
    • Power differentials among partners (gender, political, cultural) will be acknowledged and sensitively addressed to ensure a democratic research environment;
    • Communities will be fully informed of potential harm as well as potential benefits that may result from the research process; and
    • The research agenda is to be negotiated by all partners at the outset of every participatory, community-based research project.
  2. Adopt guidelines for creation of research agreements, together with the resource requirements, roles and obligations of all partners for all phases of a research project, including:
    • the exact nature of the research
    • the research objectives, goals, methods and duration
    • level of confidentiality
    • generation of the question(s), design, implementation, data analysis and interpretation, and dissemination of the results
    • principles guiding selection/inclusion of additional team members during the research process
    • interpretation and use of data
    • ownership and storage of data/biological samples and disposition of data and specimens after completion of research
    • dissemination of the results
    • follow-up activities.
  3. Promote ethical research by encouraging researchers to:
    • provide communities with an opportunity to react and respond to the findings before the completion of the final report, in the final report and in all relevant publications that arise from the research,
    • ensure appropriate acknowledgment as co-authors, contributors, etc. of community collaborators, and
    • acknowledge and/or including in a mutually acceptable way any diverging or contentious interpretations in results reporting.
  4. Promote participatory research by:
    • soliciting papers that utilize this process for presentation at the annual meetings, e.g. concurrent session tract, workshop, or special interest groups;
    • requiring written documentation of "permission to present/and or publish" from all collaborators known to have policies regarding ownership and dissemination rights, before presentation and/or publication of research with communities;
    • encouraging other primary care organizations to support the use of participatory research and to develop policy statements and guidelines;
    • forming a network to educate and inform members, other researchers and communities regarding the principles and praxis of participatory research;
    • encouraging the inclusion of the principles and applications of participatory research in residency programs and in the curricula of health professionals;
    • advocating for the principles of participatory research at the funding agency level.
  5. Promote capacity development in participatory research by developing the following resources:
    • a framework and list of resources for resolving conflicts arising from the research process;
    • a cadre of mentors with the skills of conducting participatory research, for both researchers and communities, which would serve a mentoring function to communities and researchers for participatory research;
    • a comprehensive, multidisciplinary bibliography on the ethics and praxis of participatory research, including international sources. This database will include examples of codes of research ethics for participatory research, and examples of projects including problem solving and conflict resolution strategies. The database should be available electronically to NAPCRG members and other interested parties at no cost;
    • an electronic clearing house to match interested communities with:
    • researchers, students, advisors and consultants with complementary interests and/or expertise;
    • support services, such as translation, editing assistance, consent forms, summaries/presentations, data collection, community oriented, culturally relevant, meeting coordination and facilitation, planning needs, technical assistance development, outside researchers interest, student projects, guidelines and sample ethical requirements of various institutions and communities; and
    • identifying primary care research groups and organizations.
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ACKNOWLEDGMENTS

Many people have graciously taken time to review this document and offer suggestions and criticism. Among those who have contributed their time and expertise are:

A Adelman, C Ballew, J Borkan, K Borre, AJ Cave, M Carew, P Cochran, M Daniel, MJ DuBois, B Ewigman, G Feldberg, WL Freeman, G Gibson, T Gilbert, A Gillies, K Gjeltema, K Glass, I Grava-Gubins, LA Green, LW Green, T Greenhalgh, S Gryzbowski, K Guthrie, J Haggerty, N Hansel, S Harris, CP Herbert, M Holiday, K Kandola, AL Kinmonth, M Labrecque, EB Leibow, M Malus, LM Marquez, B Masuzumi, LH Miike, W Miller, W Norcross, P Nutting, G Paradis, A Pasternak, D Pathman, W Phillips, J Reading, L Potvin, A Schofield, SM Shinagawa, T Stephens, M Stewart, S Tatemichi, K Travers, L Voakes, J Ward, C Weijer, P Woolfson, D Wrightson.

We gratefully acknowledge The Royal Society of Canada and the authors, LW Green, MA George, M Daniel, CJ Frankish, CJ Herbert, WR Bowie, M O'Neill, for permission to include The Guidelines and Categories for Classifying Participatory Research Projects in Health Promotion as an appendix. We would also like to thank the graduate students in PHS 540 at the University of Alberta, who critiqued the document and contributed to the references, especially S Barnsley, S Hulme, L Marquez, J Mignone, K Patzer; and special thanks to M Turnbull who checked and formatted the many valuable references.

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APPENDIX
STUDY OF PARTICIPATORY RESEARCH IN HEALTH PROMOTION

Guidelines and categories for classifying participatory research protocols in health promotion
Instructions

The following guidelines can serve to appraise the extent to which research projects align with principles of participatory research.

For each guideline, check only one box. Some of the guidelines may not be applicable to the research project, in which case no boxes should be checked, or boxes labeled "Not Applicable" should be added to all the guidelines for users to check when appropriate. The categories identified by boxes for most guidelines increase in appropriateness to participatory research from left to right, but the most appropriate level for some projects on some guidelines might be more toward the middle or even to the left of the row of boxes.

Guidelines

  1. Participants and the nature of their involvement:
    (a) Is the community of interest clearly described or defined?
    • no description
    • inexplicit/general
    • description
    • general description but explicit
    • general/detailed description
    • detailed description
  2. (b) Do members of the defined community participating in the research have concern or experience with the issue?
    • no concern or experience with the issue
    • little concern or experience with the issue
    • moderate concern or experience with the issue
    • much concern or experience with the issue
    • high concern or experience with the issue
  3. (c) Are interested members of the defined community provided opportunities to participate in the research process?
    • no opportunity to participate
    • little opportunity to participate
    • more than one opportunity to participate
    • several opportunities to participate
    • many opportunities to participate
    • no attention to offsetting barriers
    • low degree of attention to offsetting barriers
    • moderate degree of attention to offsetting barriers
    • moderate/high degree of attention to offsetting barriers
    • high degree of attention to offsetting barriers
  4. (e) Has attention been given to establishing within the community an understanding of the researchers' commitment to the issue?
    • no attention to the researchers' commitment
    • low attention to the researchers' commitment
    • moderate attention to the researchers' commitment
    • high attention to the researchers' commitment
    • explicit agreement on the researchers' commitment
  5. (f) Are community participants enabled to contribute their physical and/or intellectual resources to the research process?
    • no enabling of contribution from participants (researchers do it all)
    • mostly researcher effort; some support for contribution from participants
    • about equal contributions from participants and researcher
    • mostly resources and efforts of participants; researchers have some direct input
    • full enabling of participants' resources (researchers act only as facilitators)
  6. Origin of the research question:
    (a) Did the impetus for the research come from the defined community?
    • issue posed by researchers or other external bodies
    • impetus originated mainly from researchers; some input from community
    • impetus shared about equally between researchers and community
    • impetus originated mainly from community; some impetus from researchers
    • issue posed by the community
  7. (b) Is an effort to research the issue supported by members of the defined community?
    • support for research from very few, if any, community members
    • less than half of the community supports research on this issue
    • community is roughly divided on whether the issue should be researched
    • more than half of the community supports research on this issue
    • support for research from virtually all community members
  8. Purpose of the research:
    a) Can the research facilitate learning among community participants about individual and collective resources for self-determination?
    • no provision for learning process
    • low provision for learning process
    • moderate provision for learning process
    • moderate/high provision for learning process
    • high provision for learning process
  9. (b) Can the research facilitate collaboration between community participants and resources external to the community?
    • no potential for collaboration
    • low potential for collaboration
    • moderate potential for collaboration
    • moderate/high potential for collaboration
    • high potential for collaboration
  10. (c) Is the purpose of the research to empower the community to address determinants of health?
    • purpose devoid of empowerment objective
    • low priority empowerment objective
    • moderate priority empowerment objective
    • moderate/high empowerment objective
    • high priority empowerment objective
  11. (d) Does the scope of the research encompass some combination of political, social and economic determinants of health?
    • no consideration of political, social or economic determinants
    • only one or two determinants are considered
    • limited consideration of combined determinants of health
    • moderate consideration of combined determinants of health
    • comprehensive consideration of combined determinants
  12. Process and context-methodological implications:
    (a) Does the research process apply the knowledge of community participants in the phases of planning, implementation and evaluation?
    • no use of community knowledge in any phase
    • use of community knowledge in one or two phases only
    • limited use of community knowledge in all three phases
    • moderate use of community knowledge in all three phases
    • comprehensive use of community knowledge in all three phases
  13. (b) For community participants, does the process allow for learning about research methods?
    • no opportunity for learning about research
    • low opportunity for learning about research
    • moderate opportunity for learning about research
    • moderate/high opportunity for learning about research
    • high opportunity for learning about research
  14. (c) For researchers, does the process allow for learning about the community health issue?
    • no opportunity for learning about the community issue
    • low opportunity for learning about the community issue
    • moderate opportunity for learning about the community issue
    • moderate/high opportunity for learning about the issue
    • high opportunity for learning about the community issue
  15. (d) Does the process allow for flexibility or change in research methods and focus, as necessary?
    • methods and focus are predetermined; no potential for flexibility
    • mostly pre-determined methods and focus; limited flexibility about equal blend of predetermined methods and focus with flexibility
    • high flexibility; some predetermined methods and focus
    • complete flexibility; methods and focus not predetermined
  16. (e) Are procedures in place for appraising experiences during implementation of the research?
    • no procedures for appraising experiences
    • few procedures for appraising experiences
    • some procedures for appraising experiences
    • many procedures for appraising experiences
    • comprehensive procedures for appraising experiences
  17. (f) Are community participants involved in analytic issues: interpretation, synthesis and the verification of conclusions?
    • no involvement of participants in any analytic issue
    • involvement in one or two analytic issues only
    • limited involvement of participants in all three analytic issues
    • moderate involvement of participants in all three analytic issues
    • comprehensive involvement all three analytic issues
  18. Opportunities to address the issue of interest:
    (a) Is the potential of the defined community for individual and collective learning reflected by the research process?
    • research process not aligned with potential for learning
    • limited alignment of research process with potential for learning
    • moderate alignment of research process with potential for learning
    • moderate/high alignment of research process with potential for learning
    • comprehensive alignment of research process with potential for learning
  19. (b) Is the potential of the defined community for action reflected by the research process?
    • research process not aligned with potential for action
    • limited alignment of research process with potential for action
    • moderate alignment of research process with potential for action
    • moderate/high alignment of research process with potential for action
    • comprehensive alignment of research process with potential for action
  20. (c) Does the process reflect a commitment by researchers and community participants to social, individual or cultural actions consequent to the learning acquired through research?
    • no commitment to action beyond data collection and analysis and writing report for funding agencies
    • low commitment to social actions based on learning through research
    • moderate commitment to social actions based on learning through research
    • moderate/high commitment to social actions based on learning through research
    • comprehensive commitment to social actions based on learning through research
  21. Nature of the research outcomes:
    (a) Do community participants benefit from the research outcomes?
    • research benefits researchers or external bodies only
    • research benefits researchers/ external bodies primarily; community benefit is secondary
    • about equal benefit of research for both researchers/external bodies, and community
    • research benefits community primarily; benefit is secondary for researchers/ external bodies
    • explicit agreement on how the research will benefit the community
  22. (b) Is there attention to or an explicit agreement for acknowledging and resolving in a fair and open way any differences between researchers and community participants in the interpretation of the results?
    • no attention to or any agreement regarding interpretation issues
    • low attention to interpretation issues
    • moderate consideration of interpretation issues
    • high attention to interpretation issues; no explicit agreement
    • explicit agreement on interpretation issues
  23. (c) Is there attention to or an explicit agreement between researchers and community participants with respect to ownership of the research data?
    • no attention to or any agreement regarding ownership issues
    • low attention to ownership issues
    • moderate consideration of ownership issues
    • high attention to ownership issues; no explicit agreement
    • explicit agreement on ownership issues
  24. (d) Is there attention to or an explicit agreement between researchers and community participants with respect to the dissemination of the research results?
    • no attention to or any agreement regarding dissemination issues
    • low attention to dissemination issues
    • moderate consideration of dissemination issues
    • high attention to dissemination issues; no explicit agreement
    • explicit agreement on dissemination issues

SOURCE: L.W. Green, M.A. George, M. Daniel, C.J. Frankish, C.P. Herbert, W.R. Bowie, M. O'Neill, Study of Participatory Research in Health Promotion. Royal Society of Canada, Ottawa, Ontario, 1995, pp 43-50. Reproduced with the kind permission of the Royal Society of Canada and the authors.

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