Ethical Toolkit for Sharing Power with Communities in Health Priority-setting

About

  Why is the toolkit needed?

Community engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to community members. But communities, especially those considered disadvantaged and marginalised, rarely have a say in the agendas of the very health research projects that aim to help them.

 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 marginalised by their societies’ institutions and norms. Existing evidence confirms that, for example, being female, being poor, having little formal education, living with a disability, and/or belonging to certain ethnic groups means community members are listened to less or not at all during health priority-setting.

 It is, therefore, very important to carefully design health research priority-setting processes to share power with communities.

What is the purpose of the toolkit?

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. The toolkit is a reflective project planning aid for use before priority-setting is undertaken for a health research project.

How does the toolkit relate to the Research for Health Justice framework?

The toolkit is a reflective project planning aid to assist researchers implement the Research for Health Justice framework’s guidance on selecting research priorities through an inclusive process.

What is the toolkit?

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.

Who should use the toolkit?

Academic researchers and their community partners (e.g. community organisations, health care providers, policymakers) should use the toolkit together. This means completing Worksheets 1, 2, 3, and 4 as a team.

 Given the toolkit’s underlying values and assumptions, it may be especially suited for (but not limited to) use in health re­search projects that aim to advance health equity and social justice as well as in community-based health research projects.