A new ethical toolkit places community engagement at the heart of health research agenda setting
Community engagement and participation are big buzzwords in health research these days. But communities, especially those considered disadvantaged and marginalised, rarely have a say in the agendas and priorities of the very health research projects that aim to help them.
Typically, these agendas are defined by a funding call or by researchers well before community members are engaged. And even where their engagement occurs, without attention to power dynamics, it can lead to tokenism: presence without voice and voice without influence. Voices are excluded from priority-setting, particularly those already disadvantaged or marginalized by their societies’ institutions and norms.
To help address this issue, an ethical toolkit for Sharing Power with Communities in Priority-Setting for Health Research Projects has been developed. The toolkit aims to help academic researchers and community partners design priority-setting processes that will make the health needs and knowledge of communities, particularly those considered disadvantaged and marginalised, more visible in health research projects’ topics and questions. It is a reflective project planning aid for use before priority-setting is undertaken for a health research project.
The toolkit for Sharing Power with Communities in Priority-Setting for Health Research Projects is a set of four worksheets and a companion document.
Worksheet 1 helps research teams think about and collectively determine whether they can be strengthened by adding an (or additional) academic or community partner(s).
Worksheet 2 helps research teams reflect on and collectively determine whether they can share power within their partnership.
Once the research team and partnership is finalised, Worksheet 3 helps its members reflect on and collectively determine whether wider community engagement is necessary in priority-setting and, if so, whether it can be meaningfully done with members of a given community. Where meaningful engagement is necessary and possible, Worksheet 4A then helps research teams design the priority-setting process for a given health research project. Reflecting on and collectively answering Worksheet 4A questions will promote the design of priority-setting processes where power is more evenly shared with communities, particularly those considered disadvantaged and marginalised.
Where meaningful engagement is not necessary or possible, Worksheet 4B then helps research teams undertake a priority-setting process for a given health research project where power is shared between academic and community partners.
The Companion Document provides toolkit users with guidance on how to understand worksheet questions and why they are important. It should be read first.
Development of the toolkit occurred over a three-year period and was led by Dr Bridget Pratt, an ethics researcher from the Centre for Health Equity in the School of Population and Global Health, as part of an Australian Research Council Discovery Early Career Researcher Award.
The toolkit can be accessed below:
Bridget can be contacted for any assistance needed in using the toolkit at: firstname.lastname@example.org