Community engagement in global health research that advances health equity

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members in global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs.     

Fitting the message to the location: engaging adults with antimicrobial resistance in a World War 2 air raid shelter

Aims

There are many different initiatives, global and local, designed to raise awareness of antimicrobial resistance (AMR) and change audience behaviour. However, it is not possible to assess the impact of specific, small‐scale events on national and international outcomes—although one might acknowledge some contribution to the individual and collective knowledge and experience‐focused ‘science capital’ As with any research, in preparation for a public engagement event, it is important to identify aims, and appropriate methods whose results might help satisfy those aims. Therefore, the aim of this paper was to develop, deliver and evaluate an event designed to engage an adult audience with AMR.

Methods and Results

The venue was a World War 2 air raid shelter, enabling comparison of the pre‐ and postantibiotic eras via three different activity stations, focusing on nursing, the search for new antibiotics and investigations into novel antimicrobials. The use of observers released the presenters from evaluation duties, enabling them to focus on their specific activities. Qualitative measures of audience engagement were combined with quantitative data.

Conclusions

The evaluation revealed that adult audiences can easily be absorbed into an activity—particularly if hands‐on—after a brief introduction.

Significance and Impact of the Study

This research demonstrates that hands‐on practical engagement with AMR can enable high‐level interaction and learning in an informal and enjoyable environment.     

Constructing citizen engagement in health research priority‐setting to attend to dynamics of power and difference

Engaging citizens is vital to achieving people‐centred health research. This paper aims to put attention to dynamics of power and dynamics of difference back at the centre of citizen engagement in health research priority‐setting. Without attention to power and difference, engagement can lead to presence without voice and voice without influence, particularly for disadvantaged and marginalised groups. By analysing six key bodies of literature, the paper first identifies the different components of engagement—who initiates, for what purpose, who participates, and how they participate—and the dynamics of power and dynamics of difference relevant to them. For each component of engagement, the ethical considerations relating to those dimensions of power and dimensions of difference are characterised for the research priority‐setting context and preliminary guidance on how they might be addressed is provided. An initial framework comprised of a series of questions reflecting these ethical considerations has been developed for use by researchers and citizens when designing engagement processes for research projects. Where researchers and citizens attend to the framework's questions and then revise their priority‐setting processes’ design to better represent diversity and mitigate power disparities, more inclusive citizen engagement is promoted. Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass and more accurately reflect their health needs.     

Covert moral bioenhancement,public health,and autonomy

In a recent article in this journal, Parker Crutchfield argues that if moral bioenhancement ought to be compulsory, as some authors claim, then it ought to be covert, i.e., performed without the knowledge of the population that is being morally enhanced. Crutchfield argues that since the aim of compulsory moral bioenhancement is to prevent ultimate harm to the population, compulsory moral bioenhancement is best categorized as a public health issue, and should therefore be governed by the norms and values that apply in public health settings. In this article, I argue for two related claims. First, I question the extent to which compulsory moral enhancement should be considered a public health issue that ought to be governed by the norms and values that apply in public health settings. Second, I argue that Crutchfield's argument that covert moral bioenhancement would better respect people's autonomy than an overt program overlooks two important autonomy‐based reasons that, in fact, favor an overt moral enhancement program over a covert one.     

Considerations for community engagement when conducting clinical trials during infectious disease emergencies in West Africa

Community engagement in research, including public health related research, is acknowledged as an ethical imperative. While medical care and public health action take priority over research during infectious disease outbreaks, research is still required in order to learn from epidemic responses. The World Health Organisation developed a guide for community engagement during infectious disease epidemics called the Good Participatory Practice for Trials of Emerging (and Re‐emerging) Pathogens that are Likely to Cause Severe Outbreaks in the Near Future and for which Few or No Medical Counter‐Measures Exist (GPP‐EP). This paper identified priorities for community engagement for research conducted during infectious disease outbreaks drawing on discussions held with a purposive sample of bioethicists, social scientists, researchers, policy makers and laypersons who work with ethics committees in West Africa. These perspectives were considered in the light of the GPP‐EP, which adds further depth and dimension to discussions on community engagement frameworks. It concludes that there is no presumptive justification for the exclusion of communities in the design, implementation and monitoring of clinical trials conducted during an infectious disease outbreak. Engagement that facilitates collaboration rather than partnership between researchers and the community during epidemics is acceptable.     

Supporting families involved in court cases about life‐sustaining treatment: Working as academics,advocates and activists

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology—giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda—imposed by the British Research Excellence Framework— for our actions as scholar‐activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research—helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy.     

Tobacco talk: reflections on corporate power and the legal framing of consumption

This article examines how North Carolina tobacco farmers think about the moral ambiguities of tobacco business. Drawing on ethnographic research with tobacco farmers and archival research on the tobacco industry, I specify the core psychological defense mechanisms that tobacco companies have crafted for people associated with the industry. I also document local social, cultural, and economic factors in rural North Carolina that underpin ongoing rural dependence on tobacco despite the negativity that surrounds tobacco and structural adjustments. This article contributes to our knowledge about tobacco farmers and tobacco farming communities, which is important for tobacco-control strategies. I reflect on ethical and economic paradoxes related to the rise of corporate social responsibility in the tobacco industry, where an official legal framing of consumption, focused on informed adult consumer autonomy and health education, is promoted to undermine more robust public health prevention efforts.     

Tribute to Tinbergen: Public Engagement in Ethology

Public engagement in research, called citizen science, has led to advances in a range of fields like astronomy, ornithology, and public health. While volunteers have been making and sharing observations according to protocols set by researchers in numerous disciplines, citizen science practices are less common in the field of animal behavior. We consider how citizen science might be used to address animal behavior questions at Tinbergen's four levels of analysis. We briefly review resources and methods for addressing technical issues surrounding volunteer participation—such as data quality—so that citizen science can make long‐standing contributions to the field of animal behavior.     

Fair Resource Allocation to Health Research: Priority Topics for Bioethics Scholarship

This article draws attention to the limited amount of scholarship on what constitutes fairness and equity in resource allocation to health research by individual funders. It identifies three key decisions of ethical significance about resource allocation that research funders make regularly and calls for prioritizing scholarship on those topics – namely, how health resources should be fairly apportioned amongst public health and health care delivery versus health research, how health research resources should be fairly allocated between health problems experienced domestically versus other health problems typically experienced by disadvantaged populations outside the funder's country, and how domestic and non‐domestic health research funding should be further apportioned to different areas, e.g. types of research and recipients. These three topics should be priorities for bioethics research because their outcomes have a substantial bearing on the achievement of health justice. The proposed agenda aims to move discussion on the ethics of health research funding beyond its current focus on the mismatch between worldwide basic and clinical research investment and the global burden of disease. Individual funders’ decision‐making on whether and to what extent to allocate resources to non‐domestic health research, health systems research, research on the social determinants of health, capacity development, and recipients in certain countries should also be the focus of ethical scrutiny.     

Balancing competing interests and obligations in mental health‐care practice and policy

It is often challenging for mental health‐care providers and health organizations to perform their various roles and to meet their varied obligations. In complex mental health‐care circumstances the concurrent application of relevant ethical principles and values often leads to the emergence of completing obligations that need to be carefully weighed and balanced in the making of care‐related decisions. Although some clinical circumstances, such as those potentially triggering the duty to warn, are adequately guided by existing rules based on legal precedents, there is a gap in decision‐making support in other mental health‐care domains. This article proposes that a set of targeted, decision‐making approaches be developed to assist in the handling of specific, challenging circumstances. By way of illustration, two novel approaches are introduced; that is, choosing to work within a moral relational space of optimal therapeutic engagement (at the micro level of clinical practice), and the use of a health policy development approach that instantiates deliberative engagement (at the meso and macro levels of health organization).     

The Scope of Public Discourse Surrounding Proposition 71: Looking Beyond the Moral Status of the Embryo

Human embryonic stem cell research has generated considerable discussion and debate in bioethics. Bioethical discourse tends to focus on the moral status of the embryo as the central issue, however, and it is unclear how much this reflects broader community values and beliefs related to stem cell research. This paper presents the results of a study which aims to identify and classify the issues and arguments that have arisen in public discourse associated with one prominent policy episode in the United States: the 2004 Californian Stem Cell Research and Cures Initiative (also known as Proposition 71). The findings show that public discourse about Proposition 71 is characterised by a broader range of issues than those usually addressed in scholarly publications and public policy documents. While attention to the moral status of the embryo is an important issue in stem cell research, making it the main focus of public discourse has a polarising effect. This also limits opportunities to identify shared values, understand how political alliances are forged, and develop social consensus. Implications for future research and policy are discussed.     

Genetics and prevention: a policy in the making

Abstract

This article explores the processes through which the advances of genetic research are incorporated into public health care in Denmark. Drawing on ethnographic fieldwork in cancer genetic counselling, the implementation of new medical advances is investigated by following the establishment of a policy on informing relatives at risk of hereditary cancer. This case material provides the occasion to examine how policies are shaped in a governmental process through which different actors seek to establish a common goal for a specific health practice. The struggle to define such a goal implies a struggle to define where to draw the line between health and disease and what makes up a healthy person in the context of genetic knowledge. The authors argue that in the process of establishing a policy in the field of cancer genetics the imperative of prevention comes to provide the framework within which an ethics of rights and responsibilities is constituted and the target group of cancer genetic counselling defined. This ethics is not determined by or inherent in genetic technology itself, but constituted in a social process and therefore negotiated within pre-existing frameworks of understanding in professional practice.     

Mainstreaming Sex and Gender Analysis in Public Health Genomics

BackgroundThe integration of genome-based knowledge into public health or public health genomics (PHG) aims to contribute to disease prevention, health promotion, and risk reduction associated with genetic disease susceptibility. Men and women differ, for instance, in susceptibilities for heart disease, obesity, or depression due to biologic (sex) and sociocultural (gender) factors and their interaction. Genome-based knowledge is rapidly increasing, but sex and gender issues are often not explored.ObjectiveTo explore the implications of a sex and gender analysis for PHG.MethodsWe explore genome-based knowledge in relation to sex and gender aspects using depression as an example, gender equality, and the intersection of sex and gender with other social stratifiers such as ethnic background or socioeconomic status.ResultsWe advocate a sex- and gender-sensitive genomics research agenda alongside studies that provide sex-disaggregated data rather than controls based on sex. Such a research agenda is needed to guide research on how genomics is understood and perceived by men and women across groups, and for the equitable and responsible translation of such knowledge into the public health domain.ConclusionsIncluding sex and gender analysis in PHG research will not only shed more light on phenomena such as diseases with a higher prevalence in either men or women, but will ultimately lead to gendered innovations by way of exploring how gendered and cultural environments increase or safeguard genetic predispositions.     

A simple biological indicator of solar ultraviolet radiation

School science laboratory classes and hands-on public engagement activities share many common aims and objectives in terms of science learning and literacy. This article describes the development and evaluation of a microbiology public engagement activity, ‘The Good, the Bad and the Algae’, from a school laboratory activity. The school activity was developed as part of an educational resource which aimed to promote practical microbiology in the classroom. The public engagement activity was derived locally for National Science and Engineering Week 2011 and was subsequently adapted for a national science and engineering fair (The Big Bang 2012 The Big Bang. 2012. About The Big Bang Fair. http://www.thebigbangfair.co.uk/about_us.cfm. [Google Scholar]). The aim of the session was to raise awareness of the importance of algae and to encourage hands-on laboratory examination in a fun and informal manner. Evaluation of the first event, delivered in a workshop format, helped shape the educational resource before publication. The second event was modified to enable delivery to a larger audience. Both events were successful in terms of enjoyment and engagement. Over 2200 people participated in the Big Bang activity over three days, with evaluation indicating 80% of participants had increased awareness/knowledge of algae after the event. The success of both iterations of the activity demonstrates that it is possible to transform a simple school activity into an exciting and effective public engagement activity.     

PROVISION OF COMMUNITY‐WIDE BENEFITS IN PUBLIC HEALTH INTERVENTION RESEARCH: THE EXPERIENCE OF INVESTIGATORS CONDUCTING RESEARCH IN THE COMMUNITY SETTING IN SOUTH ASIA

Background: This article describes the types of community‐wide benefits provided by investigators conducting public health research in South Asia as well as their self‐reported reasons for providing such benefits. Methods: We conducted 52 in‐depth interviews to explore how public health investigators in low‐resource settings make decisions about the delivery of ancillary care to research subjects. In 39 of the interviews respondents described providing benefits to members of the community in which they conducted their study. We returned to our narrative dataset to find answers to two questions: What types of community‐wide benefits do researchers provide when conducting public health intervention studies in the community setting, and what reasons do researchers give when asked why they provided community‐wide benefits? Findings: The types of community‐wide benefits delivered were directed to the health and well‐being of the population. The most common types of benefits delivered were the facilitation of access to health care for individuals in acute medical need and emergency response to natural disasters. Respondents' self‐reported reasons when asked why they provided such benefits fell into 2 general categories: intrinsic importance and instrumental importance.     

The Ethics of Engaged Presence: A Framework for Health Professionals in Humanitarian Assistance and Development Work

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships.     

Communication Practices for Oil Spills: Stakeholder Engagement During Preparedness and Response

The Deepwater Horizon (DWH) oil spill was a pivotal moment in the expression of and reporting on stakeholder risk perceptions about oil spills, response options, and safety. Public engagement through both traditional and social media was arguably much higher than in prior spills. The DWH response organization undertook a wide variety of activities to manage risks and communicate with both the general public and those directly affected, such as commercial fishers. However, these did not fully address widespread concerns about ecological and human health risks associated with dispersant use. Consequentially the DWH spill heightened awareness of persistent risk communication problems around oil spill response, and especially dispersant use. Oil spill risk research and experience suggests that institutional and operational factors inhibit engaging communities and stakeholders during oil spill preparedness and response, and that such engagement is essential for effective risk management. In this article we review and assess current oil spill preparedness and response practices for community and stakeholder engagement, including related institutional and operational constraints. This assessment suggests five example risk management practices to improve and advance risk communications during oil spill preparedness and response activities.     

Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge

Background

Better use of research evidence (one form of “knowledge”) in health systems requires partnerships between researchers and those who contend with the real-world needs and constraints of health systems. Community-based participatory research (CBPR) and integrated knowledge translation (IKT) are research approaches that emphasize the importance of creating partnerships between researchers and the people for whom the research is ultimately meant to be of use (“knowledge users”). There exist poor understandings of the ways in which these approaches converge and diverge. Better understanding of the similarities and differences between CBPR and IKT will enable researchers to use these approaches appropriately and to leverage best practices and knowledge from each. The co-creation of knowledge conveys promise of significant social impacts, and further understandings of how to engage and involve knowledge users in research are needed.

Main text

We examine the histories and traditions of CBPR and IKT, as well as their points of convergence and divergence. We critically evaluate the ways in which both have the potential to contribute to the development and integration of knowledge in health systems. As distinct research traditions, the underlying drivers and rationale for CBPR and IKT have similarities and differences across the areas of motivation, social location, and ethics; nevertheless, the practices of CBPR and IKT converge upon a common aim: the co-creation of knowledge that is the result of knowledge user and researcher expertise. We argue that while CBPR and IKT both have the potential to contribute evidence to implementation science and practices for collaborative research, clarity for the purpose of the research—social change or application—is a critical feature in the selection of an appropriate collaborative approach to build knowledge.

Conclusion

CBPR and IKT bring distinct strengths to a common aim: to foster democratic processes in the co-creation of knowledge. As research approaches, they create opportunities to challenge assumptions about for whom, how, and what is defined as knowledge, and to develop and integrate research findings into health systems. When used appropriately, CBPR and IKT both have the potential to contribute to and advance implementation science about the conduct of collaborative health systems research.

     

Digitally supported public health interventions through the lens of structural injustice: The case of mobile apps responding to violence against women and girls

Mobile applications (apps) have gained significant popularity as a new intervention strategy responding to violence against women and girls. Despite their growing relevance, an assessment from the perspective of public health ethics is still lacking. Here, we base our discussion on the understanding of violence against women and girls as a multidimensional, global public health issue on structural, societal and individual levels and situate it within the theoretical framework of structural injustice, including epistemic injustice. Based on a systematic app review we previously conducted, we evaluate the content and functions of apps through the lens of structural injustice. We argue that technological solutions such as apps may be a useful tool in the fight against violence against women and girls but have to be situated within the broader frame of public health that considers the structural dimensions of such violence. Ultimately, the concerns raised by structural injustice are—alongside key concerns of safety, data privacy, importance of human supportive contact, and so forth—crucial dimensions in the ethical assessment of such apps. However, research on the role and relevance of apps as strategies to address the structural and epistemic dimensions of violence remains scarce. This article aims to provide a foundation for further discussion in this area and could be applicable to other areas in public health policy and practice.