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.     

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.     

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 network BiodiversityKnowledge in practice: insights from three trial assessments

In order to develop BiodiversityKnowledge, a Network of Knowledge working at the European science–policy interface for biodiversity and ecosystem services, we conducted three trial assessments. Their purpose was to test structure and processes of the knowledge synthesis function and to produce knowledge syntheses. The trial assessments covered conservation and management of kelp ecosystems, biological control of agricultural pests, and conservation and multifunctional management of floodplains. Following the BiodiversityKnowledge processes, we set up expert consultations, systematic reviews, and collaborative adaptive management procedures in collaboration with requesters, policy and decision-makers, stakeholders, and knowledge holders. Outputs included expert consultations, systematic review protocols, a group model and a policy brief. Important lessons learned were firstly that the scoping process, in which requesters and experts iteratively negotiate the scope, scale and synthesis methodology, is of paramount importance to maximize the scientific credibility and policy relevance of the output. Secondly, selection of a broad array of experts with diverse and complementary skills (including multidisciplinary background and a broad geographical coverage) and participation of all relevant stakeholders is crucial to ensure an adequate breath of expertise, better methodological choices, and maximal uptake of outcomes: Thirdly, as the most important challenge was expert and stakeholder engagement, a high visibility and reputation of BiodiversityKnowledge, supported by an incentive system for participation, will be crucial to ensure such engagement. We conclude that BiodiversityKnowledge has potential for a good performance in delivering assessments, but it requires adequate funding, trust-building among knowledge holders and stakeholders, and a proactive and robust interface with the policy and decision making community.     

Academic Cross-Pollination: The Role of Disciplinary Affiliation in Research Collaboration

Academic collaboration is critical to knowledge production, especially as teams dominate scientific endeavors. Typical predictors of collaboration include individual characteristics such as academic rank or institution, and network characteristics such as a central position in a publication network. The role of disciplinary affiliation in the initiation of an academic collaboration between two investigators deserves more attention. Here, we examine the influence of disciplinary patterns on collaboration formation with control of known predictors using an inferential network model. The study group included all researchers in the Institute of Clinical and Translational Sciences (ICTS) at Washington University in St. Louis. Longitudinal data were collected on co-authorships in grants and publications before and after ICTS establishment. Exponential-family random graph models were used to build the network models. The results show that disciplinary affiliation independently predicted collaboration in grant and publication networks, particularly in the later years. Overall collaboration increased in the post-ICTS networks, with cross-discipline ties occurring more often than within-discipline ties in grants, but not publications. This research may inform better evaluation models of university-based collaboration, and offer a roadmap to improve cross-disciplinary collaboration with discipline-informed network interventions.     

Transformative Knowledge Transfer Through Empowering and Paying Community Researchers

Environmental research is often conducted independently of the community in which the environment is situated, with transfer of results into policy and on-ground action occurring independently of the community's interests or aspirations. Increasingly the need for greater community involvement in the research process has been recognized. For community members, however, such engagement usually involves trade-offs. While it is often assumed that community members should participate voluntarily because they will gain from the research, any benefits from knowledge, understanding and a capacity to influence the research have to be offset against time and potential loss of unremunerated intellectual property. We argue, using case studies from tropical Australia and Africa, that a more effective means of engagement and knowledge transfer is training and remuneration of community members as coresearchers. This engagement is much more than payment for labor—it is investment in local intellectual property and requires researcher humility, power-sharing and recognition that access to research funding provides no moral or intellectual authority. Further, we argue that, for effective adoption of research results, community members need to be part of negotiated agreements on the initial nature of the research to ensure it answers questions of genuine local relevance and that local researchers have the capacity to place locally conducted research into a wider context. We argue that immediate rewards for involvement not only secure engagement but, where appropriate, are likely to lead to effective implementation of research results, enhanced local capacity and greater equity in intellectual power-sharing.     

Methods for structuring scientific knowledge from many areas related to aging research

Aging and age-related disease represents a substantial quantity of current natural, social and behavioral science research efforts. Presently, no centralized system exists for tracking aging research projects across numerous research disciplines. The multidisciplinary nature of this research complicates the understanding of underlying project categories, the establishment of project relations, and the development of a unified project classification scheme. We have developed a highly visual database, the International Aging Research Portfolio (IARP), available at AgingPortfolio.org to address this issue. The database integrates information on research grants, peer-reviewed publications, and issued patent applications from multiple sources. Additionally, the database uses flexible project classification mechanisms and tools for analyzing project associations and trends. This system enables scientists to search the centralized project database, to classify and categorize aging projects, and to analyze the funding aspects across multiple research disciplines. The IARP is designed to provide improved allocation and prioritization of scarce research funding, to reduce project overlap and improve scientific collaboration thereby accelerating scientific and medical progress in a rapidly growing area of research. Grant applications often precede publications and some grants do not result in publications, thus, this system provides utility to investigate an earlier and broader view on research activity in many research disciplines. This project is a first attempt to provide a centralized database system for research grants and to categorize aging research projects into multiple subcategories utilizing both advanced machine algorithms and a hierarchical environment for scientific collaboration.     

Correlates of attendance at community engagement meetings held in advance of bio-behavioral research studies: A longitudinal,sociocentric social network study in rural Uganda

BackgroundCommunity engagement is central to the conduct of health-related research studies as a way to determine priorities, inform study design and implementation, increase recruitment and retention, build relationships, and ensure that research meets the goals of the community. Community sensitization meetings, a form of community engagement, are often held prior to the initiation of research studies to provide information about upcoming study activities and resolve concerns in consultation with potential participants. This study estimated demographic, health, economic, and social network correlates of attendance at community sensitization meetings held in advance of a whole-population, combined behavioral, and biomedical research study in rural Uganda.Methods and findingsResearch assistants collected survey data from 1,630 adults participating in an ongoing sociocentric social network cohort study conducted in a rural region of southwestern Uganda. These community survey data, collected between 2016 and 2018, were linked to attendance logs from community sensitization meetings held in 2018 and 2019 before the subsequent community survey and community health fair. Of all participants, 264 (16%) attended a community sensitization meeting before the community survey, 464 (28%) attended a meeting before the community health fair, 558 (34%) attended a meeting before either study activity (survey or health fair), and 170 (10%) attended a meeting before both study activities (survey and health fair). Using multivariable Poisson regression models, we estimated correlates of attendance at community sensitization meetings. Attendance was more likely among study participants who were women (adjusted relative risk [ARR]_{health fair} = 1.71, 95% confidence interval [CI], 1.32 to 2.21, p < 0.001), older age (ARR_survey = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001; ARR_{health fair} = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001), married (ARR_survey = 1.74, 95% CI, 1.29 to 2.35, p < 0.001; ARR_{health fair} = 1.41, 95% CI, 1.13 to 1.76, p = 0.002), and members of more community groups (ARR_survey = 1.26 per group, 95% CI, 1.10 to 1.44, p = 0.001; ARR_{health fair} = 1.26 per group, 95% CI, 1.12 to 1.43, p < 0.001). Attendance was less likely among study participants who lived farther from meeting locations (ARR_survey = 0.54 per kilometer, 95% CI, 0.30 to 0.97, p = 0.041; ARR_{health fair} = 0.57 per kilometer, 95% CI, 0.38 to 0.86, p = 0.007). Leveraging the cohort’s sociocentric design, social network analyses suggested that information conveyed during community sensitization meetings could reach a broader group of potential study participants through attendees’ social network and household connections. Study limitations include lack of detailed data on reasons for attendance/nonattendance at community sensitization meetings; achieving a representative sample of community members was not an explicit aim of the study; and generalizability may not extend beyond this study setting.ConclusionsIn this longitudinal, sociocentric social network study conducted in rural Uganda, we observed that older age, female sex, being married, membership in more community groups, and geographical proximity to meeting locations were correlated with attendance at community sensitization meetings held in advance of bio-behavioral research activities. Information conveyed during meetings could have reached a broader portion of the population through attendees’ social network and household connections. To ensure broader input and potentially increase participation in health-related research studies, the dissemination of research-related information through community sensitization meetings may need to target members of underrepresented groups.

In a social network cohort study, Emily Satinsky and colleagues estimate demographic, health, economic and social network factor associated with attendance at community sensitization meetings held in advance of participation in health-related research studies in rural Uganda.     

Focus: Vaccines: Embracing the Diversity of Latinx Communities to Promote Vaccinations

While vaccine hesitancy is well documented in the literature among the Latinx community, little attention or effort is given to the nuances among the members of individual communities, such as country of origin, immigration status, generational status, primary language, race, age, sex, gender, or rural residence and how these complexities affect vaccine messaging and uptake. We have evidence that this heterogeneity causes differences in access to healthcare, attitudes towards vaccines, and degree of health disparities. In this review we will describe their impact on vaccination rates in the Latinx community, highlighting missed opportunities for public health outreach, and how targeted messaging could improve vaccine uptake.     

Some practical suggestions for improving engagement between researchers and policy‐makers in natural resource management

Summary Policy‐makers and managers in natural resource management (NRM) often complain that researchers are out of touch. Researchers often complain that policy‐makers and managers make poorly informed decisions. In this article, we report on a meeting between researchers, policy‐makers and managers convened to identify practical solutions to improve engagement between these camps. A necessary starting point is that every researcher and policy‐maker should understand, and tap into, the motivations and reward systems of the other when seeking engagement. For example, researchers can be motivated to engage in policy development if there is a promise of outputs that align with their reward systems such as co‐authored publications. Successful research–policy partnerships are built around personal relationships. As a researcher, you cannot therefore expect your results to inform policy by only publishing in journals. As a policy‐maker, you cannot guarantee engagement from researchers by publicly inviting comment on a document. Actively building and maintaining relationships with key individuals through discussions, meetings, workshops or field days will increase the likelihood that research outcomes will inform policy decisions. We identified secondments, sabbaticals, fellowships and ‘buddies’, an annual national NRM conference and ‘contact mapping’ (a Facebook‐type network) as forums that can catalyse new relationships between researchers and policy‐makers. We challenge every researcher, policy‐maker and manager in NRM to build one new cross‐cultural relationship each year.     

"Walking along beside the researcher": how Canadian REBs/IRBs are responding to the needs of community-based participatory research

Research ethics boards and institutional review boards (REBs/IRBs) have been criticized for relying on conceptions of research that privilege biomedical, clinical, and experimental designs, and for penalizing research that deviates from this model. Studies that use a community-based participatory research (CBPR) design have been identified as particularly challenging to navigate through existing ethics review frameworks. However, the voices of REB/IRB members and staff have been largely absent in this debate. The objective of this article is to explore the perspectives of members of Canadian university-based REBs/IRBs regarding their capacity to review CBPR protocols. We present findings from interviews with 24 Canadian REB/IRB members, staff, and other key informants. Participants were asked to describe and contrast their experiences reviewing studies using CBPR and mainstream approaches. Contrary to the perception that REBs/IRBs are inflexible and unresponsive, participants described their attempts to dialogue and negotiate with researchers and to provide guidance. Overall, these Canadian REBs/IRBs demonstrated a more complex understanding of CBPR than is typically characterized in the literature. Finally, we situate our findings within literature on relational ethics and explore the possibility of researchers and REBs/IRBs working collaboratively to find solutions to unique ethical tensions in CBPR.     

Increasing access for biochemistry research in undergraduate education: The malate dehydrogenase CURE community

Integrating research into the classroom environment is an influential pedagogical tool to support student learning, increase retention of STEM students, and help students identify as scientists. The evolution of course-based undergraduate research experiences (CUREs) has grown from individual faculty incorporating their research in the teaching laboratory into well-supported systems to sustain faculty engagement in CUREs. To support the growth of protein-centric biochemistry-related CUREs, we cultivated a community of enthusiastic faculty to develop and adopt malate dehydrogenase (MDH) as a CURE focal point. The MDH CURE Community has grown into a vibrant and exciting group of over 28 faculty from various institutions, including community colleges, minority-serving institutions, undergraduate institutions, and research-intensive institutions in just 4 years. This collective has also addressed important pedagogical questions on the impact of CURE collaboration and the length of the CURE experience in community colleges, undergraduate institutions, and research-intensive institutions. This work provided evidence that modular or partial-semester CUREs also support student outcomes, especially the positive impact it had on underrepresented students. We are currently focused on expanding the MDH CURE Community network by generating more teaching and research materials, creating regional hubs for local interaction and increasing mentoring capacity, and offering mentoring and professional development opportunities for new faculty adopters.     

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.     

Differential Impact of Science Policy on Subfields of Human Embryonic Stem Cell Research

In this research, we examine how restrictive policy influenced performance in human embryonic stem cell research (hESC) between 1998 and 2008. In previous research, researchers argued whether restrictive policy decreased the performance of stem cell research in some nations, especially in the US. Here, we hypothesize that this policy influenced specific subfields of the hESC research. To investigate the selective policy effects, we categorize hESC research publications into three subfields—derivation, differentiation, and medical application research. Our analysis shows that restrictive policy had different effects on different subfields. In general, the US outperformed in overall hESC research throughout these periods. In the derivation of hESC, however, the US almost lost its competence under restrictive policy. Interestingly, the US scientific community showed prominent resilience in hESC research through international collaboration. We concluded that the US resilience and performance stemmed from the wide breadth of research portfolio of US scientists across the hESC subfields, combined with their strategic efforts to collaborate internationally on derivation research.     

Research partnerships with local communities: two case studies from Papua New Guinea and Australia

Partnerships between scientists and local communities can increase research capacity and data delivery while improving management effectiveness through enhanced community participation. To encourage such collaboration, this study demonstrates how these partnerships can be formed, drawing on two case studies in coral reef ecosystems in very different social settings (Papua New Guinea and Australia). In each case, steps towards successfully engaging communities in research were similar. These included: (1) early engagement by collaborating organizations to build trust, (2) ensuring scientific questions have direct relevance to the community, (3) providing appropriate incentives for participation, and (4) clear and open communication. Community participants engaged in a variety of research activities, including locating and capturing fishes, collecting and recording data (weight, length and sex), applying external tags, and removing otoliths (ear bones) for ageing and elemental analysis. Research partnerships with communities enhanced research capacity, reduced costs and, perhaps more importantly, improved the likelihood of long-term community support for marine protected areas (MPAs).     

Expert Panel on Weight Loss Surgery: Executive Report Update

Rapid shifts in the demographics and techniques of weight loss surgery (WLS) have led to new issues, new data, new concerns, and new challenges. In 2004, this journal published comprehensive evidence‐based guidelines on WLS. In this issue, we've updated those guidelines to assure patient safety in this fast‐changing field. WLS involves a uniquely vulnerable population in need of specialized resources and ongoing multidisciplinary care. Timely best‐practice updates are required to identify new risks, develop strategies to address them, and optimize treatment. Findings in these reports are based on a comprehensive review of the most current literature on WLS; they directly link patient safety to methods for setting evidence‐based guidelines developed from peer‐reviewed scientific publications. Among other outcomes, these reports show that WLS reduces chronic disease risk factors, improves health, and confers a survival benefit on those who undergo it. The literature also shows that laparoscopy has displaced open surgery as the predominant approach; that government agencies and insurers only reimburse procedures performed at accredited WLS centers; that best practice care requires close collaboration between members of a multidisciplinary team; and that new and existing facilities require wide‐ranging changes to accommodate growing numbers of severely obese patients. More than 100 specialists from across the state of Massachusetts and across the many disciplines involved in WLS came together to develop these new standards. We expect them to have far‐reaching effects of the development of health care policy and the practice of WLS.     

On the Compliance of Women Engineers with a Gendered Scientific System

There has been considerable effort in the last decade to increase the participation of women in engineering through various policies. However, there has been little empirical research on gender disparities in engineering which help underpin the effective preparation, co-ordination, and implementation of the science and technology (S&T) policies. This article aims to present a comprehensive gendered analysis of engineering publications across different specialties and provide a cross-gender analysis of research output and scientific impact of engineering researchers in academic, governmental, and industrial sectors. For this purpose, 679,338 engineering articles published from 2008 to 2013 are extracted from the Web of Science database and 974,837 authorships are analyzed. The structures of co-authorship collaboration networks in different engineering disciplines are examined, highlighting the role of female scientists in the diffusion of knowledge. The findings reveal that men dominate 80% of all the scientific production in engineering. Women engineers publish their papers in journals with higher Impact Factors than their male peers, but their work receives lower recognition (fewer citations) from the scientific community. Engineers—regardless of their gender—contribute to the reproduction of the male-dominated scientific structures through forming and repeating their collaborations predominantly with men. The results of this study call for integration of data driven gender-related policies in existing S&T discourse.     

The maize genetics and genomics database. The community resource for access to diverse maize data

The Maize Genetics and Genomics Database (MaizeGDB) serves the maize (Zea mays) research community by making a wealth of genetics and genomics data available through an intuitive Web-based interface. The goals of the MaizeGDB project are 3-fold: to provide a central repository for public maize information; to present the data through the MaizeGDB Web site in a way that recapitulates biological relationships; and to provide an array of computational tools that address biological questions in an easy-to-use manner at the site. In addition to these primary tasks, MaizeGDB team members also serve the community of maize geneticists by lending technical support for community activities, including the annual Maize Genetics Conference and various workshops, teaching researchers to use both the MaizeGDB Web site and Community Curation Tools, and engaging in collaboration with individual research groups to make their unique data types available through MaizeGDB.     

Benthic community structure near the Woods Hole sewage outfall

Birge-Ekman box cores were used to sample the benthic invertebrate fauna near the Woods Hole, Massachusetts sewage outfall and a nearby control area. Community structure in terms of numbers and taxa fluctuated seasonally at both control site and at the outfall. The outfall fauna was dominated by small nematode worms, and the year-round maintenance of a nematode-dominated community may be a mechanism for utilization of the unpredictable, unnatural, excess organic material available around the outfall. Based on the small size of the invertebrates at the outfall compared to the other areas, it is suggested that the relationship between macrofaunal abundance and average individual size in an assemblage is a measurement of community structure which can be useful in assessing environmental disturbance.