Guidelines For Particpatory Research in Health Promotion

If we want more evidence-based practice, we need more practice-based evidence.*

Guidelines and Categories for Classifying Participatory Research Projects in Health

GUIDELINES FOR PARTICIPATORY RESEARCH IN HEALTH

Presented below are guidelines intended for use by grant application reviewers to appraise whether proposals for funding as participatory research meet participatory research criteria. These guidelines can also be used as a checklist by academic and community researchers in planning their projects.

As presented, the instrument employs what may be considered a generic set of guidelines that define participatory research. These guidelines represent a systematic attempt to make explicit and thus observable and possibly measurable the principles and defining characteristics of participatory research, from the perspective of health promotion. By objectifying these principles and characteristics, the guidelines will not find uniform favor with all those who advocate a more unstructured form of participatory research. Nevertheless, if participatory research is to be funded as research, it is necessary (for reasons discussed earlier) to make as explicit as possible the essential components of the process.

In attempting to ascribe specificity and concreteness to participatory research practice, the guidelines risk denying the very essence of leaving the agenda open for local adaptation of the research. We therefore avoided attaching a single summative scoring procedure to the guidelines and we caution the user that some of the classification categories do not follow a simple hierarchy from weak to strong participatory research. For example, guideline number 1f suggests that "community participants should be able to contribute their physical and/or intellectual resources to the research process." The categories range from "no enabling of contribution from participants (researchers do it all)" to "full enabling of participants' resources (researchers act only as facilitators)." The latter category is not necessarily better than some of the middle categories, depending on the relationship called for or negotiated by the parties involved, including community members, researchers and funding sponsors (Labonté, 1993). Another example of the need to decide on the appropriate weight to be given categories within guidelines is number 6a: "Do community participants benefit from the research outcomes? At one end of the categories is "research benefits researchers or external bodies only." At the other is "research benefits community only." A preferable arrangement to the latter might be one of the middle categories in which both benefit.

This leaves open the choice of classification procedures and weights to the funding agency or project collaborators according to the relative importance they would attach to the various dimensions and to the categories within each criterion or guideline.

GUIDELINES AND CATEGORIES FOR CLASSIFYING PARTICIPATORY RESEARCH PROJECTS IN HEALTH PROMOTION

Definition

Participatory research is defined as systematic inquiry, with the collaboration of those affected by the issue being studied, for purposes of education and taking action or effecting change.

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

(b) Do members of the defined community participating in the research have concern or experience with the issue?

r	r	r	r	r
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

r	r	r	r	r
no opportunity to participate	little opportunity to participate	more than one opportunity to participate	several opportunities to participate	many opportunities to participate

(d) Is attention given to barriers to participation, with consideration of those who have been under- represented in the past?

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

e) Has attention been given to establishing within the community an understanding of the researchers' commitment to the issue?

r	r	r	r	r
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

(f) Are community participants enabled to contribute their physical and/or intellectual resources to the research process?

r	r	r	r	r
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 researchers	mostly resources and efforts of participants; researchers have some direct input	full enabling of participantsí resources (researchers act only as facilitators)

2. Origin of the research question:

(a) Did the impetus for the research come from the defined community?

r	r	r	r	r
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

(b) Is an effort to research the issue supported by members of the defined community?

r	r	r	r	r
support for research from very few, if any, community members	less than half of the community supports research on the issue	community is roughly divided on whether the issue should be researched	more than half of the community supports research on the issue	support for research from virtually all community members

3. Purpose of the research:

(a) Can the research facilitate learning among community participants about individual and collective resources for self-determination?

r	r	r	r	r
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

(b) Can the research facilitate collaboration between community participants and resources external to the community?

r	r	r	r	r
no potential for collaboration	low potential for collaboration	moderate potential for collaboration	moderate/high potential for collaboration	high potential for collaboration

r	r	r	r	r
purpose devoid of empowerment objective	low priority empowerment objective	moderate priority empowerment objective	moderate/high priority empowerment objective	high priority empowerment objective

(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

4. Process and contextómethodological implications:

(a) Does the research process apply the knowledge of community participants in the phases of planning, implementation and evaluation?

r	r	r	r	r
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

(b) For community participants, does the process allow for learning about research methods?

r	r	r	r	r
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

r	r	r	r	r
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

(d) Does the process allow for flexibility or change in research methods and focus, as necessary?

r	r	r	r	r
methods and focus are pre-determined; no potential for flexibility	mostly pre-determined methods and focus; limited flexibility	about equal blend of pre-determined methods and focus with flexibility	high flexibility; some pre-determined methods and focus	complete flexibility; methods and focus not predetermined

(e) Are procedures in place for appraising experiences during implementation of the research?

r	r	r	r	r
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

(f) Are community participants involved in analytic issues: interpretation, synthesis and the verification of conclusions?

r	r	r	r	r
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

5. 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?

r	r	r	r	r
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

(b) Is the potential of the defined community for action reflected by the research process?

r	r	r	r	r
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

(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?

r	r	r	r	r
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

6. Nature of the research outcomes:

(a) Do community participants benefit from the research outcomes?

r	r	r	r	r
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

(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?

r	r	r	r	r
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

(c) Is there attention to or an explicit agreement between researchers and community participants with respect to ownership of the research data?

r	r	r	r	r
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

(d) Is there attention to or an explicit agreement between researchers and community participants with respect to the dissemination of the research results?

r	r	r	r	r
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

Using the Guidelines for Assessing Participatory Research Projects

A project or funding proposal should be appraised in terms of each guideline, with only one box to be checked for each guideline. Classifications of "not applicable" should be added to the instrument throughout as these may be as informative as other classifications. The purpose of the classifications is to create a profile of a project or funding proposal. This is not to imply that all projects or proposals need necessarily incorporate all guidelines. The specificity of the context of participatory research projects will decide not only which guidelines will apply, but the degree to which specific guidelines apply. Certain guidelines might not apply in a given context, and others might be emphasized to a greater degree than others. Variability between project profiles may reflect differences in alignment with principles of participatory research but such differences may not necessarily reflect differences in the appropriate application of participatory research principles.

As categorical data, rather than ordinal data, the classifications can be counted as frequencies within individual categories. An overall score or a summation classification was not considered to be useful. It would be completely contrary to the intended purpose of the guidelines to attempt to infer from a single, total summary score or classification, the degree to which a funding proposal followed principles of participatory research. Differing degrees and applications of participatory research will be deemed appropriate for different situations. Further, the use of a total score would complicate interpretation. The variable numbers of guidelines within domains would present the paradox of a de facto weighting of domains (if guidelines were to be weighted equally) or an explicit differential weighting of guidelines (if domains were to be weighted equally). Some tendency toward weighting equally or differentially will occur whether a total summary score or classification is used or not, but the unexamined consequences of forcing a single weighting system a priori are lessened if one applies other methods to interpret the results as appropriate to the grant proposals in hand.

Given the manner by which the domains and their associated guidelines were extracted from the literature, a reasonable solution is to allow the guidelines each to be equally weighted. This choice accepts an implicit weighting of domains. It acknowledges the proportional contributions to the instrument of the more prevalent components of the participatory research literature, reflected by the number of guidelines included in the instrument for the particular domain to which they pertain. Interpretation could be based, therefore, on the frequency of classifications in each category. As each classification for each guideline is made by the user indicating where between bipolar extremes he or she feels a given proposal is best represented, these could be weighted according to the importance placed by the funding agency's own priorities on the various domains, guidelines and classifications within guidelines.

Given the above, projects or grant applications could be contrasted in terms of the distribution of classifications or ratings. Moving from left to right, if the five categories are arbitrarily numbered from 1 to 5, a greater frequency of classifications in numerically lower categories over all guidelines would indicate a lesser alignment with the principles of participatory research. This approach avoids the limited perspective afforded by an overall arithmetic score or numerical classification, as it allows an appraisal of trends in the distribution of classifications. By category, overall frequencies could be expressed as counts or as percentages. Based on the emphasis of particular project goals or funding competitions, projects could be appraised and contrasted on the proportion of responses in, above or below a certain category. Such decisions could be made at the discretion of project planners or funding agencies and would not be constrained by the format of the guidelines as presented here.

Content Validity: Appraisal by External Experts

The working definition and guidelines were presented for debate to two independent expert committees, both external to the project, over the course of two eight-hour workshops spaced six months apart. Each expert committee constituted, in effect, a convenience sample derived from our systematic networking strategy. To the greatest degree possible, we took care to achieve representation from most regions of Canada. It was not possible to obtain representatives from any Territory, but several provincial representatives were located in or had worked in northern regions of their home province. The procedures and methods employed in the revisions of the guidelines are detailed in Appendices A, B and C (in the downloaded document).

Content Validity: Survey of Participatory Research Practitioners

Questionnaires were mailed to a convenience sample composed of 41 individuals who agreed to be surveyed about the representativeness of the guidelines. Each of these people had been identified as involved in participatory research projects in Canada; each represented an independent project. Of the 29 people who returned completed survey instruments, some were associated with more than one project. Details of the methodology used in the survey to validate content are given in Appendix C (see downloaded document).

The results of this survey generated further revisions to the guidelines, and thus further iterative revisions to the instrument. These revisions have been incorporated into the version of the instrument presented in pages 35-43. Improvements in the readability of the instrument were made in addition to content changes. We believe these results and improvements establish the feasibility of using the guidelines. It is also reasonable to assert that the content validity of the instrument has been established, but an ongoing appraisal of various forms of validity will continue to guide the evolution of the instrument.

Psychometric Issues to be Addressed

Issues yet to be addressed in the development of the instrument are discussed in Appendix D (in downloaded document).

Summary

We have outlined (with details in the Appendices of the original report) the process we carried out and steps still to be taken in the development of guidelines to assess participatory research protocols and projects in the field of health promotion. The guidelines can be used either by health promotion researchers to guide participatory research projects or by health research funding agencies to evaluate grant applications proposing participatory research. The guidelines are not intended to be used to appraise methodological issues relating to the validity and reliability of specific measures proposed by research funding applications, nor are the guidelines intended to be used in the absence of other pertinent procedures to evaluate the merits of any proposed line of enquiry. The guidelines are intended to appraise the extent to which a research proposal applies the principles of participatory research, mostly in health promotion funding competitions, where such competitions emphasize or provide an allowance for alternative forms of formal enquiry.

We presented the methods, results and interpretation of a comprehensive review of the theoretical and ideological basis of, and known applications of, participatory research. The method and procedures used to extract the principles of participatory research from the literature, and to distil these principles into guidelines to assess participatory research proposals are presented in Appendices in the original report published by the Royal Society of Canada, including reliability and validity issues in the development and testing of the instrument. Steps still to be taken to assess and improve the reliability and validity of the instrument are also detailed in the appendices. We conclude that further work on the development, testing and application of the guidelines will strengthen their utility in supporting participatory research and its contribution to knowledge development in health promotion.

References (Development and Applications of the Guidelines)

Cargo M, Grams GD, Ottoson JM, Ward P, Green LW. Empowerment as fostering positive youth development and citizenship. American Journal of Health Behavior 27(Suppl 1): S66-S79, 2003. [Early version of the Guidelines was field tested in this project]

Crawford, SM, & Kalina, L. Building food security through health promotion: Community kitchens. Journal of the Canadian Dietetic Association, 58 (4): 197-201, 1997.

Devier JD, Mercer SL, Brown V, Potter MA, Olds RS, Daniel M, & Green LW. How choosing different models of participatory research influences ratings, or on scales proposed for peer review and funding decisions. Paper presented at the 132^nd Annual Meeting of the American Public Health Association, Washington , DC , November, 2004.

Frankish CJ, George A, Daniel M, Doyle Waters M, Walker M: Participatory Health Promotion Research in Canada: A Community Guidebook. Ottawa: Health Canada, 1997.

Frisby, W., Crawford, S. & Dorer, T. Reflections on participatory action research: The case of low-income women accessing local physical activity services. Journal of Sport Management, 11: 8-28, 1997.

George, M.A., Green, L.W., and Daniel, M. Evolution and implications of participatory action research for public health. Promotion and Education 3(4):6-10, 1996.

George, M. A., Daniel, M., and Green, L. W. Appraising and funding participatory research in health promotion. International Quarterly of Community Health Education 18(2):181-197, 1998-99.

Green LW, George A, Daniel M, Frankish CJ, Herbert CP, Bowie WR, O'Neill M: Study of Participatory Research in Health Promotion: Review and Recommendations for the Development of Participatory Research in Health Promotion in Canada. Ottawa: Royal Society of Canada, 1995.

Green, L. W. & Stoto, M. A. Commentary - Linking research and public health practice: A vision for health promotion and disease prevention research (Editorial). American Journal of Preventive Medicine, 13 (6 Suppl): 5-8, 1997.

Green, L.W., O'Neill, M., Westphal, M., and Morisky, D. Editorial: The Challenges of Participatory Action Research for Health Promotion. Promotion & Education 3(4):3-5, 1996.

Green, L.W., George, M.A., Daniel, M., Frankish, C.J., Herbert, C.P., Bowie, W.R. and O'Neil, M. Background on participatory research. Chapter in Murphy D., Scammell, M. and Sclove, R. (eds.) Doing Community-Based Research: A Reader. Amherst, MA: The Loka Institute, 1997, pp.53-66.

Green, L.W., George, M.A., and Daniel, M. Ricerca partecipata: storia e applicazioni nella sanità pubblica. In Biocca, M. (ed.), Promozione della salute e sanità pubblica: Ricerca partecipata, epidemiologia e pianificazione. Milano, Italy: FrancoAngeli, 1997, pp. 21-33.

Green, L. W., Mercer, S. L. Can Public Health Researchers and Agencies Reconcile the Push From Funding Bodies and the Pull From Communities? [full text]. Am J Public Health 2001; 91:1926-1929. Abstract of this article and other articles citing it, online at: http://www.ajph.org/cgi/content/abstract/91/12/1926

Green L, Mercer SL. CDC’s Extramural Participatory Prevention Research Program. Presented at Society of Behavioral Medicine, Washington, DC, April 2002; to Community-Campus Partnerships for Health conference, Miami, May 4, 2002; to Board of the International Union for Health Promotion and Education, June 27, 2002; to Executive MPH Program of the University of South Florida School of Public Health, June 28, 2002; to Research!America (by Dr. Edward Baker), June 28, 2002; to CDC Director’s Advisory Committee (by Dr. William Roper), July 18, 2002. For descriptions of the 26 participatory research grants awarded, the Program Announcement, and the Press Release, go to http://www.cdc.gov/od/ophr/awards/cbpprg.htm.

Green, L. W. Ethics and Community-Based Participatory Research: Commentary on Minkler. Health Educ Behav 2004 31: 698-701 http://heb.sagepub.com/cgi/reprint/31/6/698?ct

Herbert, C. P. Community-based research as a tool for empowerment: The Haida Gwaii Diabetes Project Example. Canadian Journal of Public Health 87:109-112, 1996. [This study was underway while the guidelines were under development]

Khanlou, N.^,, Peter, E. Participatory action research: considerations for ethical review. Social Science & Med. 2005. 58: 2333-2340. Abstract | Full Text + Links | PDF (217 K).

Kinmonth, A. L., Woodcock, A., Griffin, S., Spiegal, N., Campbell, M. J. Randomized controlled trial of patient centerd care of diabetes in general practice: impact on current well-being and future disease risk. British Medical Journal, 317 (7167): 1202-1208, 1998.

Macaulay, A.C., Paradis, G., Potvin, L., et al. The Kahnawake Schools Diabetes Prevention Project: Intervention, evaluation, and baseline results of a diabetes primary prevention program with a Native community in Canada. Preventive Medicine

McGowan, P. and Green, L.W. Arthritis self-management in native populations of British Columbia: An application of health promotion and participatory research principles in chronic disease control. The Canadian Journal on Aging: 14(Suppl.1):201-212, 1995.

Mercer, S.L., MacDonald, G., Green, L.W. Participatory research and evaluation: From best practices for all states to achievable practices within each state in the context of the Master Settlement Agreement. Health Promotion Practice, 5(3): 167S-178S, July 2004.

Mercer SL, Potter MA, Green LW, Fraser EE, Coleman KD, & French JK. Community-based investigators talk to funders: What modifications could funding agencies make to their programs to promote successful participatory research? Presented at the 131st Annual Meeting of the American Public Health Association, San Francisco, November, 2003.

Mercer SL, Reed E, Clark SC , Green LW. Funders Ask Community Researchers: How Helpful are the Participatory Research Guidelines? Presented at the 54^th SOPHE Meeting, San Francisco , Nov. 2003.

Minkler, M. Ethical Challenges for the "Outside" Researcher in Community-Based Participatory Research. Health Educ Behav 2004 31:684-697. http://heb.sagepub.com/cgi/content/abstract/31/6/684?ct

Naylor, P., Wharf-Higgins, J., Blair, L., Green, L., & O'Connor, B. Evaluating the participatory process in a community-based heart health project. Social Science and Medicine 55: 1173-1187, 2002.

North American Primary Care Research Group. NAPCRG Policy Statement on Participatory Research. Nov. 6, 1998: http://www.napcrg.org/rrpolicy.html#3

Okada, K., Frankish, J.C., and Green, L.W. Participatory Research in health promotion in Japan, paper presented at XVI World Conference on Health Promotion and Health Education. San Juan, Puerto Rico, June 21-26, 1998. Abstracts "Book published by Graduate School of Public Health, Medical Sciences Campus, University of Puerto Rico, 1998, p. 95.

Plumb, M., Kavanaugh-Lynch, M., & Price, W. Community Research Collaboration Awards: Report on the Evaluation and Capacity Expansion Project, California Breast Cancer Research Program. Oakland , CA : University of California Office of the President, Sept. 2001.

Potter MA, Mercer SL, Reed, E, Miller GA, & Green LW. Academic productivity and career progression from community-based and participatory research: Are there rewards? Paper presented at the 132^nd Annual Meeting of the American Public Health Association, Washington , DC , November, 2004.

Ribisl KM, Steckler A, Linnan L, Patterson CC, Pevzner ES, Markatos E, Goldstein AO, McGloin T, Peterson AB (Univ of NC at Chapel Hill). The North Carolina Youth Empowerment Study (NC YES): A participatory research study examining the impact of youth empowerment for tobacco use prevention. Health Education & Behavior 31(5): 597-614, Oct 2004.

Simard, P., O'Neill, M., Frankish, C. J., George, A., Daniel, M. and Doyle-Waters, M. La recherche participative en promotion de la santé au Canada Francophone. , Ottawa et Québec: Santé Canada et GRIPSUL, 1997.

Trussler, T. & Marchand, R. Knowledge from Action: Community-based Research in Canada's HIV Strategy. AIDS Vancouver / Health Canada, 1998.

*For a copy of the full 1995 report on Participatory Research in Health Promotion in Canada, the original study in which the Guidelines were developed, write to, call or fax:

Health Promotion Report
c/o Royal Society of Canada
283 Sparks Street
Ottawa, Ontario K1R 7X9
Canada
Tel: 613-991-6990
Fax: 613-991-6996

They will invoice you for $17.50 Canadian or equivalent U.S.$, plus postage. 129pp., au verso en francaise.

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Addresses or Websites of Selected Users and Developers of Participatory Research:

Faculty of Nursing, University of Toronto, 50 St. George Street, Toronto, Ont., Canada M5S 3H4

The Kahnawake Schools Diabetes Prevention Project Research Team in Kahnawake Mohawk Territory: www.ksdpp.org, includes an extensive code of ethics with many of the participatory research guidelines reflected in the responsibilities assigned to researchers and community collaborators. www.ksdpp.org/code.html.

North American Primary Care Research Group's Policy Statement on Participatory Research. http://www.napcrg.org/rrpolicy.html#3.