Abstract
BackgroundCommunity organisations and community members are increasingly being involved in health research projects worldwide as part of the engagement movement. Achieving deeper forms of community engagement like partnership demands that decision-making power be shared with community partners. However, how can community partners assess if meaningful engagement and shared decision-making will be possible when approached by prospective research partners? In this paper, we explore how community organisations decide to join health research projects when approached by health researchers.MethodsCase study research was undertaken on a health systems research project in Karnataka, India called Participation for Local Action, which was carried out by local researchers in partnership with the Zilla Budakattu Girijana Abhivrudhhi Sangha, a community development organisation. In-depth interviews were conducted with the researchers, Sangha leaders and field investigators from their community.ResultsThematic analysis identified two main themes – ‘context’ and ‘deciding to engage’. The Sangha’s experience offers lessons to other community organisations that can help them when deciding to engage with researchers in terms of what features to look for in research partners and in proposed research projects, what requests to make of prospective research partners, and what sorts of outcomes or partnership agreements to accept. These lessons may be especially applicable in contexts where relationships of trust already exist between partners and where they have the skills to lead data collection and analysis.ConclusionsWe hope that this guidance will help empower community organisations to select good research partners and promote more equitable partnerships between community partners and academic researchers.
Highlights
Community organisations and community members are increasingly being involved in health research projects worldwide as part of the engagement movement
How can community organisations (CO) and community members determine if shared decision-making will be possible when approached by prospective research partners? What are the key considerations for COs and community members when deciding whether to collaborate with researchers on a health research project? It is an important question to investigate because COs and community members need guidance on these matters just as much as researchers
Lessons from the Sangha experience Despite having some areas for improvement, the Sangha experience offers other COs lessons that can help them when deciding to engage with researchers in terms of what features to look for in research partners, what features to look for in proposed research projects, what requests to make of prospective research partners, and what sorts of outcomes or partnership agreements to accept
Summary
Community organisations and community members are increasingly being involved in health research projects worldwide as part of the engagement movement. Engaging communities who are considered disadvantaged or marginalised by social institutions and norms as collaborators or partners provides a path for making their voices and concerns more audible and visible in agenda-setting and in the production of scientific knowledge. It can help address epistemic injustice and generate research topics and questions that are more explicitly focused on improving access and affordability of healthcare and services for them [8,9,10]. At all stages of the research endeavour, from prioritization of research questions, to conceptualization and conduct of the research, to interpretation of and communication of findings HPSR will benefit from being embedded within a particular context and close engagement with local actors” [11]
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