Sharing power in global health research: an ethical toolkit for designing priority-setting processes that meaningfully include communities

Abstract

To promote social justice and equity, global health research should meaningfully engage communities throughout projects: from setting agendas onwards. But communities, especially those that are considered disadvantaged or marginalised, rarely have a say in the priorities of the research projects that aim to help them. So far, there remains limited ethical guidance and resources on how to share power with communities in health research priority-setting. This paper presents an “ethical toolkit” for academic researchers and their community partners to use to design priority-setting processes that meaningfully include the communities impacted by their projects. An empirical reflective equilibrium approach was employed to develop the toolkit. Conceptual work articulated ethical considerations related to sharing power in g0l0o0bal health research priority-setting, developed guidance on how to address them, and created an initial version of the toolkit. Empirical work (51 in-depth interviews, 1 focus group, 2 case studies in India and the Philippines) conducted in 2018 and 2019 then tested those findings against information from global health research practice. The final ethical toolkit is a reflective project planning aid. It consists of 4 worksheets (Worksheet 1- Selecting Partners; Worksheet 2- Deciding to Partner; Worksheet 3- Deciding to Engage with the Wider Community; Worksheet 4- Designing Priority-setting) and a Companion Document detailing how to use them. Reflecting on and discussing the questions in Worksheets 1 to 4 before priority-setting will help deliver priority-setting processes that share power with communities and projects with research topics and questions that more accurately reflect their healthcare and system needs.

The Application of Human-Centered Design Approaches in Health Research and Innovation: A Narrative Review of Current Practices

“…To achieve inclusive design processes, intersectional aspects should be considered for stakeholder engagement and methodological choices, such as gender identity, class, sexuality, geography, age, and disability and ability [ 121 , 122 ]. Reflective project planning aids and frameworks for involving patients and the public in research and design projects should be used to guarantee meaningful engagement of stakeholders and facilitate democratic design processes [ 123 , 124 ].…”

Striving towards true equity in global health: A checklist for bilateral research partnerships

“…Not surprisingly, there have been many different iterations of principles, guidelines, and recommendations to promote more ethical and equitable global health partnerships in development, scholarship, and health care [32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47]. Important recommendations are summarized in Table 2.…”

“…Second, previous efforts often lacked practical steps that can be used during day-to-day decision making and implementation of global health partnerships. Notable exceptions include the toolkits designed by Afsana and colleagues [35] and Pratt [45,47]. Monette and colleagues state plainly, "there is a general lack of guidance available on how these principles can and should be integrated into practice" [37].…”

“…• Avoid significant logistical demands on local institutions, such as "local proposal review of projects, demand for office and desk space, overwhelming laboratory services with equipment that need electricity" Pratt (2021) [45,47] • Assess the ability of the partnership to improve the condition of local communities • Identify how LMIC community members will participate in priority-setting and identify potential barriers to power sharing among partners • Ensure inclusion of perspectives from the "disadvantaged, less influential, lower status, and/or marginalized"…”

Found in Translation: Reflections and Lessons for Qualitative Research Collaborations Across Language and Culture

“…While there is growing interest in the strategies for optimizing “team science” in general (National Research Council, 2015), little guidance exists for enhancing team practices for ensuring rigor and equitable collaboration across institutions, languages, cultures, and countries. While there is a growing literature addressing frameworks for equitable collaboration between academic researchers and community partners (Pratt, 2021), less is known about how researchers themselves can form and maintain meaningful transnational collaborations. The small existing literature has focused primarily on translation and language challenges (Chiumento et al, 2018; Tsai et al, 2004), working with cultural brokers (Hennink, 2008), and positionality of research team members (Coloma, 2008).…”