Abstract
BackgroundCommunity engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities. People living in rural and remote areas face increased barriers to participation in health research and may be unjustly excluded from participation. It is necessary to understand the process of patient and public engagement from the perspective of community members to support partnered research in underserved areas. The aim of this project was to increase understanding on how to include community members from rural and remote areas as partners on research teams.MethodsUsing purposive sampling, we completed semi-structured interviews with a representative sample of 12 community members in rural and remote areas of northern British Columbia, Canada. Interviews were audio recorded and transcribed verbatim. Following an integrated knowledge translation approach, an inductive thematic analysis was completed to incorporate researcher and knowledge user perspectives.ResultsThe factors important to community members for becoming involved in research include: 1) relevance; 2) communication; and 3) empowering participation. The analysis suggests projects must be relevant to both communities and individuals. Most participants stated that they would not be interested in becoming partners on research projects that did not have a direct benefit or value for their communities. Participants expressed the need for clear expectations and clarification of preferred communication mechanisms. Communication must be regular, appropriate in length and content, and written in a language that is accessible. It is essential to ensure that community members are recognized as subject matter experts, to provide appropriate training on the research process, and to use research outcomes to support decision making.ConclusionsTo engage research partners in rural and remote communities, research questions and outcomes should be co-produced with community members. In-person relationships can help establish trust and bidirectional communication mechanisms are prudent throughout the research process, including the appropriate sharing of research findings. Although this project did not include community members as research team members or in the co-production of this research article, we present guidelines for research teams interested in adding a patient or public perspective to their integrated knowledge translation teams.
Highlights
Community engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities
We talked to 12 community members with an interest in physical activity who live in northern British Columbia, Canada
We identified three factors that were important for research partnerships: relevance, communication, and empowering participation
Summary
There are several national-level organizations that support and provide frameworks for integrated or engaged research approaches including the Strategy for Patient-Oriented Research (SPOR) from the Canadian Institutes for Health Research [1], the Patient-Centred Outcomes Research Institute (PCORI) in the United States [2], and National Institute for Health Research (NIHR) INVOLVE in the United Kingdom [3]. These national guidelines and frameworks provide principles to support patient and public engagement in research, they do not necessarily reflect the reality of particular communities or geographies. Understanding concepts and strategies for community member engagement in health research locally will help research teams operationalize engagement in a way that supports and accounts for the characteristics, needs, and preferences of particular groups of people to develop best practice guidelines
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