Jon Salsberg

Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice

Context Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. Methods Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. Findings From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR partnerships but were contingent on key aspects of context. Conclusions We used a realist approach to embrace the heterogeneity and complexity of the PR literature. This theory-driven synthesis identified mechanisms by which PR may add value to the research process. Using the middle-range theory of partnership synergy, our review confirmed findings from previous PR reviews, documented and explained some negative outcomes, and generated new insights into the benefits of PR regarding conflicts and negotiation between stakeholders, program sustainability and advancement, unanticipated project activity, and the generation of systemic change.

Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review

BACKGROUND Systematic literature reviews identify, select, appraise, and synthesize relevant literature on a particular topic. Typically, these reviews examine primary studies based on similar methods, e.g., experimental trials. In contrast, interest in a new form of review, known as mixed studies review (MSR), which includes qualitative, quantitative, and mixed methods studies, is growing. In MSRs, reviewers appraise studies that use different methods allowing them to obtain in-depth answers to complex research questions. However, appraising the quality of studies with different methods remains challenging. To facilitate systematic MSRs, a pilot Mixed Methods Appraisal Tool (MMAT) has been developed at McGill University (a checklist and a tutorial), which can be used to concurrently appraise the methodological quality of qualitative, quantitative, and mixed methods studies. OBJECTIVES The purpose of the present study is to test the reliability and efficiency of a pilot version of the MMAT. METHODS The Center for Participatory Research at McGill conducted a systematic MSR on the benefits of Participatory Research (PR). Thirty-two PR evaluation studies were appraised by two independent reviewers using the pilot MMAT. Among these, 11 (34%) involved nurses as researchers or research partners. Appraisal time was measured to assess efficiency. Inter-rater reliability was assessed by calculating a kappa statistic based on dichotomized responses for each criterion. An appraisal score was determined for each study, which allowed the calculation of an overall intra-class correlation. RESULTS On average, it took 14 min to appraise a study (excluding the initial reading of articles). Agreement between reviewers was moderate to perfect with regards to MMAT criteria, and substantial with respect to the overall quality score of appraised studies. CONCLUSION The MMAT is unique, thus the reliability of the pilot MMAT is promising, and encourages further development.

A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects

BackgroundCommunity-Based Participatory Research (CBPR) is an approach in which researchers and community stakeholders form equitable partnerships to tackle issues related to community health improvement and knowledge production. Our 2012 realist review of CBPR outcomes reported long-term effects that were touched upon but not fully explained in the retained literature. To further explore such effects, interviews were conducted with academic and community partners of partnerships retained in the review. Realist methodology was used to increase the understanding of what supports partnership synergy in successful long-term CBPR partnerships, and to further document how equitable partnerships can result in numerous benefits including the sustainability of relationships, research and solutions.MethodsBuilding on our previous realist review of CBPR, we contacted the authors of longitudinal studies of academic-community partnerships retained in the review. Twenty-four participants (community members and researchers) from 11 partnerships were interviewed. Realist logic of analysis was used, involving middle-range theory, context-mechanism-outcome configuration (CMOcs) and the concept of the ‘ripple effect’.ResultsThe analysis supports the central importance of developing and strengthening partnership synergy through trust. The ripple effect concept in conjunction with CMOcs showed that a sense of trust amongst CBPR members was a prominent mechanism leading to partnership sustainability. This in turn resulted in population-level outcomes including: (a) sustaining collaborative efforts toward health improvement; (b) generating spin-off projects; and (c) achieving systemic transformations.ConclusionThese results add to other studies on improving the science of CBPR in partnerships with a high level of power-sharing and co-governance. Our results suggest sustaining CBPR and achieving unanticipated benefits likely depend on trust-related mechanisms and a continuing commitment to power-sharing. These findings have implications for building successful CBPR partnerships to address challenging public health problems and the complex assessment of outcomes.

Assessing the outcomes of participatory research: protocol for identifying, selecting, appraising and synthesizing the literature for realist review

BackgroundParticipatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (e.g., community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (e.g., clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships.MethodsWe addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies 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. Retained sets are being mapped and analyzed using realist review methods.ResultsThe librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods.DiscussionThe systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications.

Practice-based Research is Community Engagement

Community engagement has become a major contributor to medical research during the past 10 years and is an essential component of the current National Institutes of Health (NIH) Roadmap and the Clinical and Translational Science Awards program.[1][1][,2][2] But, what is a community? And what

Assessing the benefits of participatory research: a rationale for a realist review

Participatory research (PR) experts believe that increased community and stakeholder participation in research augments program pertinence, quality, outcome, sustainability, uptake, and transferability. There is, however, a dearth of assessments and measurement tools to demonstrate the contribution of participation in health research and interventions. One systematic review of PR, conducted for the Agency for Health Research and Quality (AHRQ), provided no conclusive evidence concerning the benefits of community participation to enhance research and health outcomes. To overcome methodological gaps and barriers of the AHRQ review, we propose to conduct a systematic realist review, which can be understood as a theory-driven qualitative review capable of capturing the often complex, diffuse and obtuse evidence concerning participation. Reviewing how PR mechanisms and contextual factors mediate and moderate outcomes, the review will generate and test hypotheses (middle-range theories) conceptualizing the benefits of participation and will portray the manner and circumstances in which participation influences outcomes.

Understanding the social context of school health promotion program implementation

Purpose – Although implementation fidelity is an important component in the evaluation of school health promotion programs, it assumes that teaching is the most relevant teacher role. To understand the social context of program implementation, a qualitative study was undertaken with the aim of identifying the schoolteachers role in implementing the objectives of the Kahnawake Schools Diabetes Prevention Project (KSDPP), a locally governed Kanienke:haka (Mohawk) community‐based diabetes prevention program.Design/methodology/approach – Prospective semi‐structured interviews were conducted cross‐sectionally with 30 teachers, two administrators and one physical education teacher across four intervention years. Interviews were analysed retrospectively using qualitative thematic analysis.Findings – In implementing KSDPP objectives teachers adopted, to varying degrees, the roles of teaching the health education curriculum, enforcing the school nutrition policy, role modelling healthy lifestyles, and encouraging...

Using a participatory approach to the development of a school-based physical activity policy in an Indigenous community.

BACKGROUND This study is part of a larger community-based participatory research (CBPR) project to develop, implement, and evaluate the physical activity component of a school-based wellness policy. The policy intervention is being carried out by community stakeholders and academic researchers within the Kahnawake Schools Diabetes Prevention Project, a well-established health promotion organization in the Indigenous community of Kahnawake, Quebec. METHODS We explored how a group of stakeholders develop a school physical activity policy in a participatory manner, and examined factors serving as facilitators and barriers to the development process. This case study was guided by an interpretive description approach and draws upon data from documentary analysis and participant observation. RESULTS A CBPR approach allowed academic researchers and community stakeholders to codevelop a physical activity policy that is both evidence-based and contextually appropriate. The development process was influenced by a variety of barriers and facilitators including working within existing structures, securing appropriate stakeholders, and school contextual factors. CONCLUSIONS This research offers a process framework that others developing school-based wellness policies may use with appropriate modifications based on local environments.

Transforming mental health services: a participatory mixed methods study to promote and evaluate the implementation of recovery-oriented services

BackgroundSince 2007, the Mental Health Commission of Canada has worked collaboratively across all provinces to publish a framework and strategy for recovery and well-being. This federal document is now mandated as policy for implementation between 2012 and 2017. The proposed strategies have been written into provincial health plans, hospital accreditation standards, and annual objectives of psychiatric departments and community organizations. The core premise is: to empower persons with mental illness and their families to become participants in designing their own care, while meeting the needs of a diverse Canadian population. However, recovery principles do not come with an implementation guide to fit the variability of different local contexts. How can policy recommendations and accreditation standards be effectively tailored to support a diversity of stakeholder values? To our knowledge, there is little evidence indicating the most effective manner to accelerate the uptake of recovery-oriented services among providers in a given/particular mental health treatment setting.Methods/DesignThis three-year Canadian Institute of Health Research Partnership in Health System Improvement and The Rx&D Health Research Foundation (HRF) Fostering Canadian Innovation in Research study (2013 to 2017) proposed participatory approaches to implementing recovery principles in a Department of Psychiatry serving a highly diverse Canadian and immigrant population. This project will be conducted in overlapping and recursive phases: I) Conduct formative research to (a) measure the current knowledge and attitudes toward recovery and recovery-oriented practices among service providers, while concurrently (b) exploring the experiential knowledge of recovery service-users and family members; II) Collaborate with service-users and the network-identified opinion leaders among providers to tailor Recovery-in-Action Initiatives to fit the needs and resources of a Department of Psychiatry; and III) Conduct a systematic theory-based evaluation of changes in attitudes and practices within the service-user/service-provider partnership group relative to the overall provider network of the department and identify the barriers and supports within the local context.DiscussionOur anticipated outcome is a participatory toolkit to tailor recovery-oriented services, which will be disseminated to the Mental Health Commission of Canada and Accreditation Canada at the federal level, agencies at the provincial levels, and local knowledge end-users.

Advancing Social Capital Interventions from a Network and Population Health Perspective

Social capital theory has yet to be fully translated into health promotion and population health intervention research. What is a social capital intervention? The following chapter takes a network approach to social capital to define a social capital intervention, and a series of models and guiding principles for conceptualizing social capital interventions. Rather than thinking about social capital interventions as being characterized by certain common activities or strategies, we propose that such interventions be guided by theoretical and methodological principles. These principles highlight the role that social capital can play in addressing population health and health equity issues.