The ethics and politics of community engagement in global health research

Reynolds, Lindsey; Sariola, Salla

doi:10.1201/9781003011187-1

Cited by 64 publications

(38 citation statements)

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“…Community engagement has long been promoted as a core element of participatory health research and there is rising consensus that community engagement is ethically and scientifically essential for all health research [1]. As such, research institutions, international research ethics guidelines and funding bodies now promote, or even mandate, community engagement as an important component of even 'traditional' non-participatory health research [2][3][4]. Funders of health systems research in lowand middle-income countries, for example, frequently require or expect engagement to be undertaken [5].…”

Section: Introductionmentioning

confidence: 99%

What should community organisations consider when deciding to partner with researchers? A critical reflection on the Zilla Budakattu Girijana Abhivrudhhi Sangha experience in Karnataka, India

Pratt

Seshadri

Srinivas

2020

Health Res Policy Sys

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Background Community 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. Methods Case 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. Results Thematic 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. Conclusions We 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.

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Section: Introductionmentioning

confidence: 99%

What should community organisations consider when deciding to partner with researchers? A critical reflection on the Zilla Budakattu Girijana Abhivrudhhi Sangha experience in Karnataka, India

Pratt

Seshadri

Srinivas

2020

Health Res Policy Sys

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“…Correspondingly, community engagement (CE) for vaccinations is increasingly been recognized and proposed by decisionmakers [4] as a core component of working toward health equity, with a focus on community-based participatory research [5][6][7]. CE is lauded for its methodological gains in translating research ndings [8] and fostering positive perceptions of vaccines and immunization-related interventions [9], while decreasing the likelihood of therapeutic misconception [10]. Also, CE is recognized for its assertion that research and interventions with people and without their inputs is unethical [11].…”

Section: Introductionmentioning

confidence: 99%

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

Dutta

Meyerson

Agley

et al. 2020

Preprint

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Background: Globally, and in India, the research literature on vaccination highlights importance of community engagement in achieving national vaccination goals. However, community engagement, and “community” itself, are not well-defined and remains underutilized approach to realize health equity in this context. There is also paucity of literature on community engagement’s effectiveness in achieving vaccination outcomes. To address that gap, this study interviewed influential Indian vaccination decisionmakers to derive a shared understanding of the evolving conceptualization of community engagement, and how it has been fostered during India’s Decade of Vaccines (2010-2020).Methods: Semi-structured interviews were conducted with 25 purposefully sampled national-level vaccine decisionmakers in India, including policymakers, immunization program heads, and vaccine technical committee leads. Participants were identified by their ‘elite’ status among decisionmakers in the Indian vaccination space. Using Schutz’ Social Phenomenological theory, an a priori framework derived from the Social Ecological Model was used to guide coders’ conceptualizations of communities, community engagement, and related themes. Inter-rater reliability was computed for a subsample of coded interviews, and findings were validated in a one-day member check-in meeting with study participants and teams. Results: Interpretation of the data elucidated commonly-held understanding of terminology and engagement interventions by elite vaccine decisionmakers. Participants conceptualized ‘communities’ as vaccine-eligible children, their parents, frontline healthcare workers, and vaccination influencers. Engagement with those communities was understood to mean vaccine outreach, capacity-building of healthcare workers, and information dissemination. However, participants indicated that there were neither explicit policy guidelines defining community engagement nor pertinent evaluation metrics, despite awareness that community engagement is complex and under-researched. Examples of different approaches to community engagement ranged from vaccine imposition to empowered community vaccination decision-making. Finally, participants proposed an operational definition of community engagement and discussed concerns related to implementing it.Conclusions: Although decisionmakers had different perceptions about what constitutes a community, and how community engagement optimally should function, the combined group articulated its importance and reiterated the need for concerted political-will to build trust with communities. At the same time, work remains to be done both in terms of research on community engagement as well as development of appropriate implementation and outcome metrics.

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“…Despite a stated mission to put patient expertise at the front and centre of healthcare services in the UK (NHS, 2015), routinised underestimation of patient expertise remains widespread in young people's non-specialist healthcare settings, echoing findings from sickle cell research from more than two decades ago (see for example Midence & Elander, 1994;Waters & Thomas, 1995). Whilst patient/public involvement is rarely straightforward (Cooke & Kothari, 2002;Renedo & Marston, 2015;Reynolds & Sariola, 2018), listening to the lived experiences of those who are living with a health condition can improve clinical expertise. If young people are to influence health service improvement and assert their right to quality care, patient expertise must be better recognised in healthcare environments and supported 'on the ground' in healthcare encounters.…”

Section: Discussion: Implications Of Findings and Recommendations Formentioning

confidence: 99%

Obstacles to use of patient expertise to improve care: a co-produced longitudinal study of the experiences of young people with sickle cell disease in non-specialist hospital settings

Miles

Renedo

Augustine³

et al. 2019

Critical Public Health

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Involving young people in their own healthcare is a global priority, yet we know little about how this might work in practice. In this paper, coproduced between academic researchers and people with lived experiences of sickle cell and its treatment, we examine how young people with sickle cell disease attempt to use their expertise in their own condition during emergency hospital admissions and through encounters with healthcare workers who are not sickle cell specialists. Our qualitative longitudinal research in England examined young people's experiences of hospital encounters via repeat and one-off interviews. We show that young people's expertise is sometimes undermined, including not being taken seriously when they report pain. They face barriers to care in non-specialist wards, particularly when they are alone with nobody to advocate for them. Although healthcare services use rhetoric that encourages young people to take control of their health and act as patient experts, in practice young people's expertise is routinely ignored. To improve health service quality, and meet the needs of young people, young people's own expertise must be better supported in routine interactions with healthcare providers. ARTICLE HISTORY

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The ethics and politics of community engagement in global health research

Cited by 64 publications

References 1 publication

What should community organisations consider when deciding to partner with researchers? A critical reflection on the Zilla Budakattu Girijana Abhivrudhhi Sangha experience in Karnataka, India

What should community organisations consider when deciding to partner with researchers? A critical reflection on the Zilla Budakattu Girijana Abhivrudhhi Sangha experience in Karnataka, India

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

Obstacles to use of patient expertise to improve care: a co-produced longitudinal study of the experiences of young people with sickle cell disease in non-specialist hospital settings

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