If we want more evidence-based practice, we need more practice-based evidence.*
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Table of Contents
Guidelines and Categories for Classifying Participatory Research Projects in Health Promotion
Using the Guidelines for Assessing Participatory Research Projects
Content Validity: Survey of Participatory Research Practitioners
Inter-rater Reliability Tested and Revised Guidelines and Ratings
Click
here
for the paper on Participatory Research by
Justin Jagosh - to be published soon in Milbank Quarterly (in press). This work has been led by the Centre for Participatory Research at McGill University (PRAM)
[http://pram.mcgill.ca]
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. Return to the top of this page 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? r r r r r 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 (c) Are interested members of the defined community provided opportunities
to participate in the research process? 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? r r r r r 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 (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 (c) Is the purpose of the research to empower the community to address
determinants of health? 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? r r r r r 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 (c) For researchers, does the process allow for learning about the
community health issue? 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. Return to the top of this page 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). Return to the top of this page 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. Return to the top of this page Psychometric Issues to be Addressed Issues yet to be addressed in the development of the instrument are
discussed in Appendix D (in downloaded document). Return to the top of this page 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. Return to the top of this page Inter-rater Reliability Tested and Revised Guidelines and Ratings Return to the top of this page References (Development and Applications of the Guidelines) Braun, K.L., Nguyen, T.T., Tanjasiri, S.P., Campbell, J., Heiney, S.P.,
Brandt, H.M., Smith, S.A., Blumenthal, D.S., Hargreaves, M., Coe, K., Ma, G.X.,
Kenerson, D., Patel, K., Tsark, J., and Hébert, J.R. Operationalization
of Community-Based Participatory Research Principles: Assessment of the National
Cancer Institute's Community Network Programs
explicit agreement on the
researchers' commitment
Return to the top of this page
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Below are the references for the papers and conference posters/presentations/workshop as part of work led by the Centre for Participatory Research at McGill University (PRAM)
Papers:
Jagosh J, Macaulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, Sirett E, Wong G, Cargo M, Herbert CP, Seifer SD, Green LW, Greenhalgh T. Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice. Milbank Quarterly, 90(2) (in press for June 2012).<http://pram.mcgill.ca/realist_review2012.php>,
2012
J Jagosh, P Pluye, AC Macaulay, J Salsberg, J Henderson, E Sirett, PL Bush, R Seller, G Wong, T Greenhalgh, M Cargo, CP Herbert, SD Seifer, LW Green. Assessing the Outcomes of Participatory Research: Protocol for Identifying, Selecting and Appraising the Literature for Realist Review. Implementation Science, 6(24).<http://www.implementationscience.com/content/6/1/24>,
2011
AC Macaulay, J Jagosh, R Seller, J Henderson, M Cargo, T Greenhalgh, G Wong, J Salsberg, LW Green, C Herbert, P Pluye. Benefits of Participatory Research: A Rationale For a Realist Review. Global Health Promotion, 18(2); 45-48.<http://ped.sagepub.com/content/18/2/45>,
2011
Posters/Presentations/Workshops:
J Jagosh, AC. Macaulay, P Pluye, J Salsberg, J Henderson, R Seller, T Greenhalgh, G Wong, C Herbert, M Cargo, LW Green. "Assessing The Benefits of long-Term Partnerships in Community-based Participatory Research. Published Abstract of the North American Primary Care Research Group Annual Meetings. Seattle, WA." Family Medicine, Vol 44 (Suppl 1); January 201<http://www.stfm.org/fmsup/napcrg/fmconferencesupplement.cfm?confid=135>,
2012
J Jagosh, AC. Macaulay, P Pluye, J Salsberg, J Henderson, R Seller, T Greenhalgh, G Wong, C Herbert, M Cargo, LW Green. "The Benefits of Community-based Participatory Research: A Realist Review. Published Abstract of the North American Primary Care Research Group Annual Meetings. Seattle, WA." Family Medicine, Vol 43 (Suppl 1); January 2011<http://www.stfm.org/fmsup/napcrg/fmconferencesupplement.cfm?confid=135>,
2011
Macaulay, AC; Pluye, P; Salsberg, J; Seller, R; Jagosh, J; Henderson J; Greenhalgh T; Wong G; Herbert C; Cargo M; Green LW; Gascon-Barre, M; Mowat, D; Stachenko, S; Lapore, I; Seifer, S; Clements, D; Desjardins, S. "Are There Benefits to Participatory Research?: A systematic realist review of community-based health research partnerships. North American Primary Care Research Group Annual Meetings. Montreal, Quebec, November 14-18." Family Medicine, Vol 42 (Suppl 2) February 2010<http://www.stfm.org/fmsup/napcrg/fmconferencesupplement.cfm?confid=133>,
2010
J Jagosh, J Salsberg, P Pluye , AC Macaulay, P Bush. "Applying Realist Review Methodology to Complex Health Intervention Assessment (Workshop)." Canadian Public Health Association (CPHA) Annual Meetings, Montreal, June 19-22 2011<http://www.cpha.ca/en/conferences/conf2011.aspx>,
2011
J Salsberg, AC Macaulay. "Assessing the Outcomes of Community-Based Participatory Research: A Realist Review of What Works, for Whom, and in What Circumstances." CU Expo 2011, Waterloo, ON., May 10-14<http://www.cuexpo2011.ca/programming>,
2011
*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.
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.