Community engagement in population-level research in the context of Covid-19 in rural Bangladesh

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Abstract

Globally, researchers have been struggling with the ethical and practical questions of implementing community-based population-level research interventions during the Covid-19 pandemic. The safety of researchers and participants while implementing the interventions, and the need to avoid overburdening a health system already under pressure, are priorities, but it is also important to understand community perspectives on research. This article analyses community opinions about restarting a population-level community-based intervention for the prevention and control of type 2 diabetes in rural Bangladesh in a population of 120,000. We used qualitative phone interviews, discussions with key stakeholders and consultation with a trial steering committee. Community members were able and interested to attend intervention group meetings, but Covid-19 preventative measures were not being implemented routinely. People with diabetes did not perceive themselves to be at particular risk from Covid-19. Community members were meeting in groups and felt safe among friends and neighbours, but they did not feel safe among ‘outsiders’. As a result of our community engagement, we restarted the intervention but controlled the size of the groups and screened group members and group facilitators for Covid-19 symptoms. Community engagement enabled community members to contribute to decisions about how to restart the intervention.

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James Childress, Ruth Faden, Ruth D Gaare … (2002)

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Jonathan Boote, Rosemary Telford, Cindy Cooper (2002)

The involvement of consumers in health research is now Department of Health policy within the UK. Despite the existence of policy directives, there is a dearth of knowledge on the effects of such involvement. This paper critically reviews the state of our knowledge on this issue, and maps out a research agenda with the aim of stimulating systematic, empirical inquiry into consumer involvement in health research. The paper discusses definitions of 'the consumer'; considers why consumer involvement is believed to be important to health research; traces the development of the policy; analyses the epistemological and methodological implications of the policy; discusses the various levels of consumer involvement in research; and outlines the objections to the policy that have been put forward by clinicians and researchers. Four questions were identified during the review as being in need of theoretical and empirical attention: (1) how can consumer involvement in health research be further conceptualised? (2) how and why does consumer involvement influence health research? (3) how can the influence of consumers in health research be measured and evaluated? and (4) what factors are associated with 'successful' consumer involvement in health research?

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Community engagement and the human infrastructure of global health research

Katherine King, Pamela A. Kolopack, Maria Merritt … (2014)

Background Biomedical research is increasingly globalized with ever more research conducted in low and middle-income countries. This trend raises a host of ethical concerns and critiques. While community engagement (CE) has been proposed as an ethically important practice for global biomedical research, there is no agreement about what these practices contribute to the ethics of research, or when they are needed. Discussion In this paper, we propose an ethical framework for CE. The framework is grounded in the insight that relationships between the researcher and the community extend beyond the normal bounds of the researcher-research participant encounter and are the foundation of meaningful engagement. These relationships create an essential “human infrastructure” – a web of relationships between researchers and the stakeholder community—i.e., the diverse stakeholders who have interests in the conduct and/or outcomes of the research. Through these relationships, researchers are able to address three core ethical responsibilities: (1) identifying and managing non-obvious risks and benefits; (2) expanding respect beyond the individual to the stakeholder community; and (3) building legitimacy for the research project. Summary By recognizing the social and political context of biomedical research, CE offers a promising solution to many seemingly intractable challenges in global health research; however there are increasing concerns about what makes engagement meaningful. We have responded to those concerns by presenting an ethical framework for CE. This framework reflects our belief that the value of CE is realized through relationships between researchers and stakeholders, thereby advancing three distinct ethical goals. Clarity about the aims of researcher-stakeholder relationships helps to make engagement programs more meaningful, and contributes to greater clarity about when CE should be recommended or required.