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.     

Beyond ethnic entrenchment and amelioration: an analysis of non-sectarian social movements and Lebanon’s consociationalism

Research on consociational power-sharing divides on whether it provides a successful model for peacebuilding or instead exacerbates antagonistic ethnic divisions. In these debates, non-sectarian movements are either invisible or rendered as actors marginalized, co-opted, stripped of agency and disempowered by power-sharing. This article moves the focus away from “either” “or” analyses of consociationalism measuring its capacity to entrench or weaken ethnic divisions. Alternatively, it examines the different ways power-sharing effects a range of issues and groups and the varying modes of engagement generated by non-ethnic social movements in response. Power-sharing creates various dynamics that can result in either hegemonic compliance, constructive engagement, or active resistance by social movement actors that cross-cut ethnic cleavages. Using Lebanon as a case study, the paper examines movements that deal with sexuality, privatization, and public goods, issues that are shaped by consociational institutions but rarely incorporated in power-sharing research.     

Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study

There has been a substantial increase in research activity on autism during the past decade. Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap. This study therefore investigated the views of community involvement in autism research both from the perspectives of autism researchers and of community members, including autistic adults, family members and practitioners. Results from a large-scale questionnaire study (n = 1,516) showed that researchers perceive themselves to be engaged with the autism community but that community members, most notably autistic people and their families, did not share this view. Focus groups/interviews with 72 participants further identified the potential benefits and remaining challenges to involvement in research, especially regarding the distinct perspectives of different stakeholders. Researchers were skeptical about the possibilities of dramatically increasing community engagement, while community members themselves spoke about the challenges to fully understanding and influencing the research process. We suggest that the lack of a shared approach to community engagement in UK autism research represents a key roadblock to translational endeavors.     

An ethics of anthropology-informed community engagement with COVID-19 clinical trials in Africa

The COVID-19 pandemic has reinforced the critical role of ethics and community engagement in designing and conducting clinical research during infectious disease outbreaks where no vaccine or treatment already exists. In reviewing current practices across Africa, we distinguish between three distinct roles for community engagement in clinical research that are often conflated: 1) the importance of community engagement for identifying and honouring cultural sensitivities; 2) the importance of recognising the socio-political context in which the research is proposed; and 3) the importance of understanding what is in the interest of communities recruited to research according to their own views and values. By making these distinctions, we show that current practice of clinical research could draw on anthropology in ways which are sometimes unnecessary to solicit local cultural values, overlook the importance of socio-political contexts and wider societal structures within which it works, potentially serving to reinforce unjust political or social regimes, and threaten to cast doubt on the trustworthiness of the research. We argue that more discerning anthropological engagement as well as wider collaboration with other social scientists and those working in the humanities is urgently needed to improve the ethics of current biomedical and pharmaceutical research practice in Africa.     

Impact of Three Years Training on Operations Capacities of Research Ethics Committees in Nigeria

This paper describes a three‐year project designed to build the capacity of members of research ethics committes to perform their roles and responsibilities efficiently and effectively. The project participants were made up of a cross‐section of the membership of 13 Research Ethics Committees (RECs) functioning in Nigeria. They received training to develop their capacity to evaluate research protocols, monitor trial implementation, provide constructive input to trial staff, and assess the trial's success in promoting community engagement in the research. Following the training, technical assistance was provided to participants on an ongoing basis and the project's impacts were assessed quantitatively and qualitatively. Results indicate that sustained investment in capacity building efforts (including training, ongoing technical assistance, and the provision of multiple tools) improved the participants’ knowledge of both the ethical principles relevant to biomedical research and how effective REC should function. Such investment was also shown to have a positive impact on the knowledge levels of other RECs members (those who did not receive training) and the overall operations of the RECs to which the participants belonged. Building the capacity of REC members to fulfill their roles effectively requires sustained effort and investment and pays off by enabling RECs to fulfill their essential mission of ensuring that trials are conducted safely and ethically.     

Property as sovereignty in micro: the state/property nexus and the Cyprus Problem

This article shows that landed property can be an exercise of state sovereignty in micro. I argue that property tightly relates to statehood and that the concept of ‘community’ offers us a lens with which to investigate that relation. Property's ‘communal’ character in Cyprus often transcends individual rights to ownership. A house belongs not to an individual, but to persons in their capacity as members of either the Greek-Cypriot or Turkish-Cypriot constitutional communities of the Republic. Focusing on the moral and political claims that ensue from this premise, I show how refugee Cypriots encounter and rearticulate the state in a variety of institutions as they lay claims to property (periousia) – their own or others’. Consequently, I argue that thinking through ‘community’ contributes to understandings of the linkage between property and statecraft (what I call the state/property nexus). In turn, this allows us to better comprehend statehood in post-conflict domains.     

The role of community engagement in addressing bystander risks in research: The case of a Zika virus controlled human infection study

There is limited guidance on how to assess the ethical acceptability of research risks that extend beyond research participants to third parties (or “research bystanders”). Community or stakeholder engagement has been proposed as one way to address potential harms to community members, including bystanders. Despite widespread agreement on the importance of community engagement in biomedical research, this umbrella term includes many different goals and approaches, agreement on which is ethically required or recommended for a particular context. We analyse the case of a potential Zika virus human challenge trial to assess whether and how community engagement can help promote the ethical acceptability of research posing risks to bystanders. We conclude that, in addition to having intrinsic value, community engagement can improve the identification of bystander risks, effective approaches to minimizing them, and transparency about bystander risks for host communities.     

The allure of art and intellectual property: artisans and industrial replicas in Mexican cultural economies

This article considers the establishment of a collective trademark by Mexican artisans which occurred in response to the discovery of industrial replicas of Oaxacan woodcarvings, and it suggests that artisans’ appeals to intellectual property cannot be readily understood as resulting from the economic or cultural threat that the replicas ostensibly pose. By bringing an analysis of aesthetics and the desirability of art into anthropological discussions of intellectual property, I argue that intellectual property is appealing to cultural producers in such contexts because it seems to offer an opportunity to stabilize the ambiguities concerning the relationship between authorship and the allure of artworks within competitive cultural markets. I conclude that in this case, claims to intellectual property reveal concerns that are more about local practices than about foreign production.     

Optimising the monitoring of tropical aquatic resources through the development of Indigenous scientific capability

Involving Indigenous community members to assist with the monitoring of harvested populations can greatly assist with the sustainable use of these resources. The benefits of training Indigenous community members in western scientific methods include: increased capability development, increased employment opportunities and more cost effective monitoring output than could be undertaken by government agencies. The aim of this project was to develop a training course to provide elementary scientific skills to Indigenous participants from communities throughout the Northern Territory of Australia. The short term goals of the training were: (1) to increase the capacity of Indigenous communities to conduct monitoring activities and collect biological and physical samples, (2) to increase the employment opportunities for Indigenous community members by providing them with additional skills and a recognised qualification and (3) To provide a cost effective way of conducting monitoring activities in remote areas by using local capability rather than incurring the expense of sending a research team to these locations. The longer term goal of the training is to facilitate the development of research partnerships between Indigenous community members and management agencies as a first step in the move to co-management of aquatic resources. The key components for successfully developing the course were; consistent engagement with Indigenous communities to build relationships and identify priorities for both the community and government agency, the course content involved participation from community members and government scientists, the training addressed the needs of students with English as a second language, the course content was heavily practical and pictorial, assessments were verbal and/or practical and students were housed in accommodation that allowed them to conduct the course to the best of their ability. The research that has been conducted by the participants, as well as three students gaining employment in government research agencies since the completion of the course, suggest that the training has been successful in achieving its short term goals. The research partnerships that have been developed between the government agency and Indigenous community members are still in their infancy, so the move to co-management between these groups is still several years away. However, this training has provided an initial step in this process by increasing the monitoring capability within a substantial number of coastal Indigenous communities that allows them to participate in research programs that underpin the management of their aquatic resources.     

Community Perceptions of Hospitals and Shared Physical Space: A Qualitative Study

In addition to providing critical medical services to communities, hospitals are also forces of broader change when seen from the perspective of neighborhood development. Over the past few decades the obligation on the part of U.S. nonprofit hospitals to positively impact the communities in which they are located has become entrenched in both U.S. tax law and the practices of many hospitals. This article presents findings from a grounded theory qualitative study of the relationship between a non-profit children’s hospital in Columbus, Ohio, and the neighborhood in which it is located. Based on in-depth interviews with local residents and community leaders, findings suggest that community members often interpret distance, safety, and transportation in different, and often counter-intuitive ways. Drawing upon literature from medical geography and sociology, the authors argue that hospitals may benefit from working closely with community members to determine how space is understood and constructed when planning community health interventions.     

At the Crossroads of Human Rights and Anthropology: Toward a Critically Engaged Activist Research

In this article, I consider anthropology's engagement with human rights today. Through the lens of my experience in a case brought before the International Labor Organization by a community in Chiapas, Mexico, I consider the ethical, practical, and epistemological questions that arise in research defined by rights activism. I argue that the critical engagement brought about by activist research is both necessary and productive. Such research can contribute to transforming the discipline by addressing the politics of knowledge production and working to decolonize our research process. Rather than seeking to avoid or resolve the tensions inherent in anthropological research on human rights, activist research draws them to the fore, making them a productive part of the process. Finally, activist research allows us to merge cultural critique with political action to produce knowledge that is empirically grounded, theoretically valuable, and ethically viable.     

Synthesis: Sharing Ecological Knowledge—The Way Forward

Knowledge sharing between scientists and nonscientist stakeholders is necessary to implement research findings in an appropriate and effective manner within the context of the environment and conservation sectors. Yet scientific ecological knowledge is rarely shared and transferred effectively. This special section has addressed a number of opportunities and barriers to the improvement of scientific communication and knowledge transfer with respect to environmental management in tropical settings. A main challenge is seen in creating a research 'impact-metric' system, which is fundamental to foster knowledge sharing with institutional research incentives. Partnering with local institutions and research centers as well as participatory research methods will promote effective knowledge exchange. Research relevance and impact will be improved by matching interdisciplinary research with local capacity building and support through research activities. We conclude that training the next generation of tropical biologists through more effective knowledge sharing will be crucial to the long term success of scientifically based environmental management in tropical regions.     

Social Geomatics: Participatory Forest Mapping to Mediate Resource Conflict in the Bolivian Amazon

This paper describes a participatory mapping method field tested with agro-extractive settlements in the Bolivian Amazon. A regional transition from customary to formal property rights resulting from sweeping 1996 land tenure reforms has led to confusion and conflicts over resource rights, a problem compounded by recent high market prices for Brazil nuts. In response to community requests to clarify resource rights to Brazil nut trees, CIFOR offered to train community members to map trees, trails and other key features themselves. This experience indicates that local residents can map their resources in an effective and efficient way and in the process gather necessary information to mediate competing claims, demonstrate their legitimate resource claims to external stakeholders and make management decisions. We argue that maps and properties are more likely to be seen as legitimate reflections of de facto rights if local stakeholders are involved as a group from the outset.     

Community Members' Engagement with and Involvement in Genomic Research: Lessons to Learn from the Field

In this paper, we describe the potential role laypersons on ethics committees can play in ensuring community concerns are addressed in the design and implementation of genomic research. We draw inferences from the outcome of an empirical study of the impact of training of laypersons to address community engagement issues in ethics review of research protocol. While this paper does not advocate a particular solution, it describes the importance of community engagement in genomic research, the current limitations there are in engaging communities in the design of these research projects and how communities can be indirectly engaged in the design and implementation of genomic research through the engagement of laypersons on ethics committees. However, to ensure that these laypersons can play this role, their capacity needs to be built to play this role appropriately. There is evidence to show that where resources are invested in building the capacity of laypersons to play their role as community ‘watchdogs’ in research, they play this role aptly. Community engagement is important in genomic research as genomic researchers will increasingly require community perspectives in critical ethics decision making.     

Linking Human and Ecosystem Health: The Benefits of Community Involvement in Conservation Groups

This study explored the health, well-being, and social capital benefits gained by community members who are involved in the management of land for conservation in six rural communities across Victoria. A total of 102 people participated in the study (64 males; 38 females) comprising 51 members of a community-based land management group and 51 controls matched by age and gender. Mixed methods were employed, including the use of an adapted version of Buckner’s (1988) Community Cohesion Scale. The results indicate that involvement in the management of land for conservation may contribute to both the health and well-being of members, and to the social capital of the local community. The members of the land management groups rated their general health higher, reported visiting the doctor less often, felt safer in the local community, and utilized the skills that they have acquired in their lifetime more frequently than the control participants. Male members reported the highest level of general health, and the greatest satisfaction with daily activities. Members also reported a greater sense of belonging to the local community and a greater willingness to work toward improving their community than their control counterparts. Of equal importance is evidence that involvement in voluntary conservation work constitutes a means of building social capital in rural communities which may help reduce some of the negative aspects of rural life.     

Debating Ethics in HIV Research: Gaps between Policy and Practice in Nigeria

HIV prevention is a critical health issue in Nigeria; a country that has one of the worst HIV epidemic profiles in the world. With 270,000 new infections in 2012, Nigeria is a prime site for HIV prevention research. One effect of the HIV epidemic has been to revolutionalise ethical norms for the conduct of research: it is now considered unethical to design and implement HIV related studies without community engagement. Unfortunately, there is very little commensurate effort in building the capacity of local persons to engage actively with researchers, and there is no existing platform to facilitate dialogue between researchers and communities engaged in research in Nigeria. In an effort to address this gap, we undertook a series of three community dialogues (Phase One) and two community‐researcher interface meetings (Phase Two) in Nigeria. This paper aims to give an empirical account of the dialogue from these community engagement processes and provide a resulting critique of the implementation of research ethics practices in Nigeria. It is anticipated that the outputs will: (i) support researchers in designing community‐based research protocols; (ii) inform ethics committees of key considerations during research protocol reviews from a community perspective; and (iii) inform policy makers and research sponsors about issues of primary concern to communities with respect to HIV research.     

Coupling Community Heterogeneity and Perceptions of Conservation in Rural South Africa

Concerns about the impacts of national parks and protected areas upon local populations have generated significant interest in community conservation initiatives that attempt to include local knowledge and participation in natural resource decision-making. While there has been much interest in the institutional frameworks and livelihood impacts of community conservation, emerging research is documenting the various factors that shape local perceptions. This paper uses a case study of the Mahushe Shongwe Game Reserve in South Africa to examine the key variables shaping community perceptions of community conservation. We employ multinomial logistic regression models to understand views of the benefits and future direction of the reserve. These models are coupled with information collected from semi-structured interviews that assists in providing a detailed, and more complex, understanding of the diverse ways that community conservation is perceived by local residents. The paper demonstrates that multiple factors, particularly household history, education, and gender contribute in shaping views of the reserve. While these variables are often identified in the academic literature as important, we argue that the combination of qualitative and quantitative methods helps reveal the interplay between them in shaping perceptions of community conservation.     

Partnering for Greater Success: Local Stakeholders and Research in Tropical Biology and Conservation

Local communities are important stakeholders in resource management and conservation efforts, particularly in the developing world. Although evidence is mixed in suggesting that these resident stakeholders are optimal forest stewards, it is highly unlikely that large tracts of tropical forests will be conserved without engaging local people who depend on them daily for their livelihoods. Stakeholders, who reside in biodiverse ecosystems like tropical forests, are the largest direct users and ultimate decision-makers of forest fate, can be important investors in conservation, harbor local ecological knowledge that complements Western science and frequently have long-term legitimate claims on lands where they reside. Research partnerships with local stakeholders can increase research relevance, enhance knowledge exchange and result in greater conservation success. Different phases of the research cycle present distinct opportunities for partnership, with flexibility in timing, approaches and strategies depending on researcher and local stakeholder needs and interests. Despite being the last step in the research process, dissemination of results can be the best starting point for researchers interested in experimenting with local stakeholder engagement. Still, tropical biologists might not choose to partner with local people because of lack of institutional rewards, insufficient training in stakeholder engagement, insecure research infrastructure in community settings, and time and funding limitations. Although not appropriate in all cases and despite significant challenges, some biological scientists and research institutions have successfully engaged local stakeholders in the research process, proving mutually beneficial for investigators and local people alike and resulting in important innovations in tropical biology and conservation.     

Engaging with Community Researchers for Exposure Science: Lessons Learned from a Pesticide Biomonitoring Study

A major challenge in biomonitoring studies with members of the general public is ensuring their continued involvement throughout the necessary length of the research. The paper presents evidence on the use of community researchers, recruited from local study areas, as a mechanism for ensuring effective recruitment and retention of farmer and resident participants for a pesticides biomonitoring study. The evidence presented suggests that community researchers’ abilities to build and sustain trusting relationships with participants enhanced the rigour of the study as a result of their on-the-ground responsiveness and flexibility resulting in data collection beyond targets expected.     

Challenges faced by research ethics committees in El Salvador: results from a focus group study

Objective:  To identify perceived barriers to capacity building for local research ethics oversight in El Salvador, and to set an agenda for international collaborative capacity building.
Methods:  Focus groups were formed in El Salvador which included 17 local clinical investigators and members of newly formed research ethics committees. Information about the proposed research was presented to participants during an international bioethics colloquium sponsored and organized by the St. Jude Children's Research Hospital in collaboration with the National Ethics Committee of El Salvador and the University of El Salvador. Interviews with the focus group participants were qualitatively analyzed.
Results:  Participants expressed the need to tailor the informed consent process and documentation to the local culture; for example, allowing family members to participate in decision-making, and employing shorter consent forms. Participants indicated that economic barriers often impede efforts in local capacity building. Participants valued international collaboration for mutual capacity building in research ethics oversight.
Conclusions:  Research ethics committees in El Salvador possess a basic knowledge of locally relevant ethical principles, though they need more training to optimize the application of bioethical principles and models to their particular contexts. Challenges increase the value of collaborative exchanges with ethics committee members in the United States. Further research on facilitating communication between host country and sponsor country ethics committees can maximize local research ethics expertise, and thus raise the standard of protecting human participants involved in international research.