Participatory Research (PR) is the collaborative co-governance of research, involving researchers and those affected by issues under study or who are in positions to act on the knowledge generated by research (e.g.
, end-users including participants of an intervention, clinicians, health managers, policy makers) [1
]. PR proponents claim that this approach enhances health outcomes by increasing cultural and logistical relevance of programs to their settings [1
], promotes community empowerment [3
], and facilitates the translation of research-generated health knowledge into practice [1
]. Also suggested is that co-governance with end-users can unearth the social, political, and economic contexts that underpin both facilitators and barriers to knowledge and resources needed for health [1
Despite its lauded benefits, there is a dearth of primary research and systematic reviews assessing the impact of PR on research and health outcomes. Assessment difficulties have been attributed to: the diversity of research methodologies, settings, and groups; the lack of standardized evaluation and reporting frameworks; and insufficient numbers of completed studies using a PR approach [10
]. We addressed these challenges by conceptualizing PR assessment using realist review methodology [12
], and specifically by developing a unique set of identification, selection, appraisal, and synthesis procedures to address the non-uniformity and complexity of the PR literature. By developing and applying these tools iteratively, we only retained studies that: were completed participatory health interventions; demonstrated high levels of participation by non-academic stakeholders (i.e.
, excluding studies in which end-users were not involved in co-governing throughout the stages of research); and contained detailed descriptions of the participatory process and context, required for realist synthesis.
Our rationale for applying a realist approach to this topic is described elsewhere [13
]. Described here are the tools and procedures we developed and used for identification, selection, appraisal, and synthesis. Publication of our findings is forthcoming.
Who we are
This systematic review is funded by a grant from the Canadian Institutes for Health Research, and is coordinated through the centre for PR at McGill (PRAM). PRAM's mandate is to: promote critical scholarship in PR; develop a multidisciplinary network of researchers; collaborate with funders and ethics boards to promote the development of PR guidelines; and support the competent use of PR through seminars, continuing medical education, faculty development workshops, consultations, resource development, and student training.
The research team consists of the PRAM core group of eight co-investigators and researchers (ACM, ES, JH, JJ, JS, PLB, PP & RS), five co-investigators from other institutions with expertise in PR or in realist review (CH, GW, LG, MC & TG), and seven knowledge user (decision maker) partners (see Appendix 1: Tables , and ). The partners were invited to participate to maximize relevancy and uptake of the review findings. They are administrators representing Canadian federal and provincial health research funding agencies and public health agencies, as well as an institutional ethics review board, and an organization for community-university engagement. The partners helped in shaping the initial review questions, writing or reviewing the grant proposal, providing feedback on the tools, and reviewing publication drafts. Guiding principles for the partnership were written at the start of the review (see Appendix 2). The core group met regularly during the research process to review progress, develop procedures, troubleshoot and maintain correspondence with the full team.
Through the initial funding application process, the research questions were developed by the core group and sent to the partners to further define the aim of the proposed review according to their experiences and the priorities of their organizations. Consensus on the need to produce a comprehensive account of the benefits of PR and on the three review questions was reached.
Three research questions were:
1. What benefits, if any, can be observed from the collaborative steering of health intervention research by researchers and those affected by the issues under study or who would apply research results?
2. How can the benefits of such PR collaboration be conceptualized?
3. How do variations in program context and mechanisms influence the process and outcomes of collaborative health intervention research?
A librarian-guided literature search was conducted in February 2009. The initial search strategy (see Appendix 3: Table ) captured PR in all disciplines, including agriculture, education, health, management, and social sciences. This comprehensive search was built for two main reasons: publications pertaining to complex health-related PR interventions are located in academic journals in many disciplines (e.g., social work), and retrieving conceptual frameworks and theoretical models of PR outside health disciplines was thought to be helpful in addressing our second research question. Synonyms and related terms were used such as community-based PR, action research, participatory action research, participative evaluation, and emancipatory evaluation. A total of 7,167 citations were retrieved.
Tool development and coding procedure for identification, selection, and appraisal
Three tools were developed (for identification, selection, and appraisal) in March, June, and October 2009, respectively. Modifications were made during each stage after piloting. Each stage processed a different type of data: citations in identification; full-text papers in selection; and sets of publications in appraisal. Each criterion in the tools was coded '1' for yes, '0' for no, or '2' for unsure. Two reviewers independently coded all citations. A citation, a full-text paper, or a set of papers was retained if both reviewers coded '1' to all criteria in the tool. A third team member reviewed papers in instances of disagreement between the coders, and after discussion and debate within the team, cast a tie-breaking code.
Construction of a WIKI page
A collaborative, private online workspace, called Wiki [14
], was created to allow all members of the team to share knowledge, access information, comment, and interact via asynchronous discussion. Significantly, the wiki afforded co-investigators and decision-maker partners continuous access to the work in-progress. Members routinely added their work to the wiki at each stage of the review. All citations, full-text papers, excel sheets, meeting minutes, and other resources are stored on the website and available for all team members to access at any time.
The identification tool consisted of three questions. This step funnelled the number of citations from 7,167 to 594.
1. Does the citation indicate health-related research?
2. Does the citation indicate PR?
3. Does the citation indicate some form of data (process or outcome)?
The librarian (JH) retrieved the 594 full-text papers, which were read by two independent reviewers, using a selection tool initially comprised of six questions in June 2009, with an additional two questions added in October 2009. The first six questions were:
1. Does the full-text paper still indicate health-related research?
2. Does the full-text paper indicate that participation occurred in the following three areas:
a. partners were involved in identifying or setting the research questions?
b. partners were involved in setting the methodology or collecting data or analysing the data?
c. partners were involved in uptake or dissemination of the research findings (this requirement was loosely applied after consulting our co-investigators, because it was felt publication often predates uptake and the participatory effort in dissemination is often not addressed)?
3. Does the full-text paper describe the research setting? (indicate community-based, organizational, or other (describe))
4. Does the full-text paper indicate empirical research (i.e., that there is some description of methods, data collection and analysis)? (Specify the methodology)
5. Does the full-text paper describe PR-related outcomes?
6. Does the full-text paper describe PR processes or contexts (or is there a reference to the process/context in a cited companion paper)?
Two hundred articles remained from 594 after filtering them through the selection tool. Due to the complexity of the dataset, we decided at this stage to further limit the scope of our review to community-based settings, and to participatory interventions. Our rationale was that: PR in all forms (community-based PR, organizational PR, action research) was too diverse to be assessed within one review; the complexity of PR benefits from community-based research provided a manageable set of studies; intervention research demonstrated more complexity of outcomes than non-intervention research, and would be best suited for analysis using realist review methods; and the pool of studies needed to be reduced to a manageable size for an in depth realist synthesis (analysis). Adding two questions reduced the pool to 83 studies. These were: Does the full-text paper indicate intervention research? Does the full-text paper indicate a community-based setting?
Confirmation from principal investigators
Contact with principal investigators of all full-text papers retained after selection was undertaken because descriptions of programs, methods, and findings of PR interventions were found to be commonly described across a number of publications pertaining to the same intervention. It was thus necessary to confirm that we had complete sets of papers in order to fairly appraise projects according to the realist review approach. Before contacting authors, we read the article retained in selection to note if other companion papers were included in the list of references. For each study, we then sent our list of papers to the corresponding author or PI, and asked them to confirm that we had the complete set, or to send us additional documents. Eighty-three letters were sent via email and we received responses from 32 PIs (39%), either confirming that we had the complete set, or sending us additional publications. Only those sets of studies in which the contacted researcher responded to our request were retained for appraisal.
The appraisal tool consisted of three questions. An additional 11 sets were eliminated after screening with the tool below, which left a total of 23 sets, comprising 276 documents that were retained for synthesis. See Appendix 4: Table for a complete breakdown of the number of cases retained at each stage.
Identification, selection, and appraisal flow chart
1. Did we receive an answer from the principle investigator confirming we have the complete set of publications for each study or providing additional publications?
2. Does the set of papers describe the outcomes in sufficient detail?
3. Does the set of papers describe the participatory process and context in sufficient detail?
For questions two and three, we deemed a set of publications to have sufficient detail if we were able to see at least one example of co-governance having an impact on the research processes or outcomes (i.e., being able to create at least one CMO configuration).
Background on realist synthesis methods can be found elsewhere [12
]. Appendix 5 provides definitions of key realist review concepts: middle-range theory, demi-regularities, and context-mechanism-outcome configurations. The synthesis process is being undertaken in eight iterative and overlapping steps:
1. Searching for explanatory middle-range theories.
2. Preliminary annotating and extracting of data that pertain to PR processes.
3. Identifying demi-regularities based on annotated data.
4. Embedding context-mechanism-outcome configurations in the larger chronology of partnership events.
5. Sorting CMO configurations according to demi-regularities.
6. Refining CMO configurations, with particular attention to identifying the mechanisms;
7. Confirming or modifying our understanding of the demi-regularities based on refined CMOs.
8. Confirming the relevance of our identified middle-range theories as applied to these CMO configurations.
All steps in the synthesis were conducted by one of three members of the team (JJ, PLB, ES) and then cross-checked by one of six members (JJ, PLB, ES, ACM, JS, PP). Once we received confirmation from the PI that we had the complete set of papers for a given partnership, data pertaining to any effect of participation was annotated and extracted. That evidence was examined by the wider team in order to identify predictable patterns of behavior (demi-regularities) to explain typical outcome patterns. Due to the fact that project descriptions were written across multiple papers, we then mapped the project lifecycles using PREZI software. The lifecycles describe the chain of program activities, implementation steps, and descriptions of stakeholders. All data pertaining to the effect of the participatory approach, (which was annotated from the previous step), was incorporated in the map and configured in terms of the context, mechanism and outcome involved. For cross-checking by a second team member, these CMOs were referenced with the article, page, and paragraph number. All core team members confirmed the accuracy of the maps. The CMO configurations from the maps are currently being organized according to demi-regularity and being refined in terms of the mechanism. The final stages of our synthesis will include confirming or refining our understanding of the demi-regularities at play and the middle-range theories that provide an explanatory framework for how, why and in what circumstances PR works.