Background Vaccine hesitancy has hampered the control of COVID-19 and other vaccine-preventable diseases. Methods We conducted a national internet-based, quasi-experimental study to evaluate COVID-19 vaccine informational videos. Participants received an informational animated video paired with the randomized assignment of (1) a credible source (differing race/ethnicity) and (2) sequencing of a personal narrative before or after the video addressing their primary vaccine concern. We examined viewing time and asked video evaluation questions to those who viewed the full video. Results Among 14,235 participants, 2,422 (17.0%) viewed the full video. Those who viewed a personal story first (concern video second) were 10 times more likely to view the full video (p < 0.01). Respondent–provider race/ethnicity congruence was associated with increased odds of viewing the full video (aOR: 1.89, p < 0.01). Most viewers rated the informational video(s) to be helpful, easy to understand, trustworthy, and likely to impact others' vaccine decisions, with differences by demographics and also vaccine intentions and concerns. Conclusion Using peer-delivered, personal narrative, and/or racially congruent credible sources to introduce and deliver vaccine safety information may improve the openness of vaccine message recipients to messages and engagement.

Background: Community engagement (CE) is increasingly accepted as a critical aspect of health research, because of its potential to make research more ethical, relevant and well implemented. While CE activities linked to health research have proliferated in Low and Middle Income Countries (LMICs), and are increasingly described in published literature, there is a lack of conceptual clarity around how engagement is understood to ‘work’, and the aims and purposes of engagement are varied and often not made explicit. Ultimately, the evidence base for engagement remains underdeveloped. Methods: To develop explanations for how and why CE with health research contributes to the pattern of outcomes observed in published literature, we conducted a realist review of CE with malaria research – a theory driven approach to evidence synthesis. Results: We found that community engagement relies on the development of provisional ‘working relationships’ across differences, primarily of wealth, power and culture. These relationships are rooted in interactions that are experienced as relatively responsive and respectful, and that bring tangible research related benefits. Contextual factors affecting development of working relationships include the facilitating influence of research organisation commitment to and resources for engagement, and constraining factors linked to the prevailing ‘dominant health research paradigm context’, such as: differences of wealth and power between research centres and local populations and health systems; histories of colonialism and vertical health interventions; and external funding and control of health research. Conclusions: The development of working relationships contributes to greater acceptance and participation in research by local stakeholders, who are particularly interested in research related access to health care and other benefits. At the same time, such relationships may involve an accommodation of some ethically problematic characteristics of the dominant health research paradigm, and thereby reproduce this paradigm rather than challenge it with a different logic of collaborative partnership.

BACKGROUND: Despite the growing recognition for the need to improve the health of prisoners in Canada and the need for health research, there has been little discussion of the ethical issues with regards to health research with prisoners in Canada. The purpose of this paper is to encourage a national conversation about what it means to conduct ethically sound health research with prisoners given the current realities of the Canadian system. Lessons from the Canadian system could presumably apply in other jurisdictions. MAIN TEXT: Any discussion regarding research ethics with Canadian prisoners must begin by first taking into account the disproportionate number of Indigenous prisoners (e.g., 22-25% of prisoners are Indigenous, while representing approximately 3% of the general Canadian population) and the high proportion of prisoners suffering from mental illnesses (e.g., 45% of males and 69% of female inmates required mental health interventions while in custody). The main ethical challenges that researchers must navigate are (a) the power imbalances between them, the correctional services staff, and the prisoners, and the effects this has on obtaining voluntary consent to research; and (b), the various challenges associated to protecting the privacy and confidentiality of study participants who are prisoners. In order to solve these challenges, a first step would be to develop clear and transparent processes for ethical health research, which ought to be informed by multiple stakeholders, including prisoners, the correctional services staff, and researchers themselves. CONCLUSION: Stakeholder and community engagement ought to occur in Canada with regards to ethical health research with prisoners that should also include consultation with various parties, including prisoners, correctional services staff, and researchers. It is important that national and provincial research ethics organizations examine the sufficiency of existing research ethics guidance and, where there are gaps, to develop guidelines and help craft policy.

Policy and management related to the release of organisms generated by emerging biotechnologies for pest management should be informed through public engagement. Regulatory decisions can be conceptually distinguished into the development of frameworks, the assessment of the release of a specific modified organism, and implementation decisions such as location and timing. Although these decisions are often intertwined in practice, the negotiation takes place at different stages of technology development and suggests different roles for public engagement. Some approaches to public engagement are more appropriate for different purposes and situations, and it is not always obvious how to go about matching the approach to the purpose. In addition to the diverse technologies involved in generating modified organisms, there are diverse publics with particular interests and different kinds of knowledge. Institutional interests range from commercial development to public regulation and future uptake. Contextual features, such as agency mandates, may limit or structure the extent and approach to public engagement. Different convening groups (government agencies, public interest groups, academics, businesses) and the kind of decision that is being considered determine what kind of input is needed and how the engaging groups will be constituted. This paper considers how the context of the release of genetically modified insects for pest control requires expanding approaches to the design of the public engagement.

2017 marked the 70 anniversary of the Nuremberg Code. The ethics of research with human beings has been shaped by the simplicity of its core logic, i.e., that the voluntary consent of research participants is sacrosanct and, when given, creates profound obligations of care and respect on the part of researchers. But there are other aspects of the global research enterprise that warrant more deliberate ethical scrutiny. One of these is the fairness of research collaborations and partnerships and the many practical challenges that make fair partnerships difficult to achieve. Corruption in governments and institutions, unequal access to research funding among researchers and research institutions, and enormous disparities in institutional capacity to support research partnerships are just some of the factors that present obstacles to fair partnerships between high income country (HIC) and low and middle income country (LMIC) partners, and within LMICs and HICs alike. Serious attention to these structural disparities, and the ways they shape the ethical character of the research enterprise, is long overdue. Achieving fairness in research partnerships is, in essence, a complex policy and management challenge. Against this backdrop, COHRED has developed and pilot-tested the Research Fairness Initiative (RFI) with several leading research institutions around the world. The RFI was designed as a tool for promoting self-reflection on, and public reporting of, institutional practices and policies related to research partnerships to create a continuous improvement process for research collaborations. Here, we report promising preliminary results of the RFI's impact, including TDR-WHO's recent publication of its first RFI report . The RFI provides a pragmatic strategy to explicitly address fairness in research partnerships as a fundamental requirement of the ethics of research.

The World Health Organization (WHO) defines an effective round of mass drug administration (MDA) for lymphatic filariasis (LF) as one that reaches at least 65% of the target population. In its first round of MDA in 2011–2012, the National Program to Eliminate LF in Haiti achieved a 79% epidemiological coverage in urban Port-au-Prince. In 2013, coverage dropped below the WHO threshold and has declined year-over-year to a low of 41% in 2017. We conducted a retrospective qualitative case study to identify key factors behind the decline in coverage in Port-au-Prince and ways to address them. Our findings suggest that the main contributors to the decline in MDA coverage appear to be the absence of effective documentation of practices, reporting, analysis, and program quality improvement—i.e., learning mechanisms—within the program’s MDA design and implementation strategy. In addition to their contribution to the program’s failure to meet its coverage targets, these defi-cits have resulted in a high cost for the MDA campaign in both lost momentum and depleted morale. Through a proposed operating logic model, we explore how the pathway from program inputs to outcomes is influenced by a wide array of mediating factors, which shape potential participants’ experience of MDA and, in turn, influence their reasoning and decisions to take, or not take, the pills. Our model suggests that the decisions and behavior of individuals are a reflection of their overall experience of the program itself, mediated through a host of contextual factors, and not simply the expression of a fixed choice or preference. This holistic approach offers a novel and potentially valuable framing for the planning and evaluation of MDA strategies for LF and other diseases, and may be applicable in a variety of global health programs.

Importance: Early emerging adulthood, the developmental life stage roughly spanning between the ages of 18 and 24 years, can be a challenging time for individuals living with type 1 diabetes, being associated with an increased risk of acute complications, loss to follow-up, and the emergence of long-term diabetes complications. Few evidence-based interventions exist, and practice guidelines instead emphasize the importance of delivering individualized, developmentally appropriate care. Objective: To inform the provision of tailored care and education by illuminating the individual lived experiences of emerging adults with type 1 diabetes. Design, Setting, and Participants: This qualitative study used in-depth interviews conducted with 33 emerging adults living with type 1 diabetes between October 14, 2016, and May 16, 2017. Participants were recruited from 2 urban Young Adult Diabetes Clinics in the city of Toronto, Ontario, Canada, using a convenience sampling approach. Narrative analysis of participants' accounts was conducted inductively to define story typology. Main Outcomes and Measures: Participant accounts of type 1 diabetes during childhood, adolescence, and emerging adulthood. Results: Interviews were conducted with 33 participants aged 18 to 24 years (mean [SD] age at interview, 20.6 [1.7] years); 17 (51%) were women. Duration of diabetes ranged from 3 to 20 years (mean [SD] duration, 12.0 [4.8] years). Narrative analysis identified 3 distinct story types, or lenses, termed ingrained (n = 14), intrusive (n = 12), and inconspicuous (n = 7). Ingrained narratives portrayed an active integration of diabetes self-management into daily life. Intrusive narratives were characterized by stories of struggles for acceptance and striving for control. Inconspicuous narratives were differentiated by descriptions of a willingness to ignore diabetes and its attendant daily tasks with the goals of preserving normalcy and limiting distress. Mean levels of hemoglobin A1c were higher in participants conveying an intrusive lens narrative (mean [SD], 9.3% [1.6%]) than those conveying an ingrained lens (mean [SD], 7.4% [0.7%]) (difference between intrusive and ingrained, 1.9%; 95% CI, 0.8%-2.9%; P =.007) or an inconspicuous lens (mean [SD], 8.6% [1.5%]). Conclusions and Relevance: Although every person is unique, there are commonalities in how emerging adults perceive and depict their experiences living with type 1 diabetes. Among the emerging adults interviewed in the present study, the 3i conceptual framework of ingrained, intrusive, and inconspicuous lenses encapsulated these commonalities. Recognition of the different psychosocial contexts surrounding type 1 diabetes during emerging adulthood may help health care professionals individualize their care accordingly.

Background In response to reports of thrombosis with thrombocytopenia syndrome (TTS) post-vaccination, the Johnson & Johnson (J&J) vaccine was paused and then restarted in April 2021. Our objective was to assess whether this pause adversely impacted vaccine confidence. Methods Two large internet-based surveys were conducted in the US among adults to measure knowledge, attitudes and perceptions of the J&J vaccine pause and rates of vaccine hesitancy among unvaccinated persons before, during and after the pause. Results Among 66% of respondents aware of the pause, 44% identified blood clots as the reason for the pause without prompting. The impact of the pause on vaccine behavior among unvaccinated persons and perception of the vaccine safety system was mixed and modified by trust in the public health authorities. Those who were less willing to get vaccinated because of the pause were less inclined for all vaccines, not only the J&J product. Moreover, a notable proportion (22.1%) of the small number of persons (n = 30) vaccinated with the J&J vaccine after the pause reported not receiving information about the risk of TTS. The proportion of unvaccinated persons who were hesitant was increasing before and during the pause and then leveled off after the pause. Conclusions The J&J vaccine pause is unlikely to be a major barrier to vaccine uptake. Public attitudes about vaccines may be more resilient than appreciated, especially when safety issues are investigated with transparent communication. This paper has important implications for messaging and program administration with future vaccine-specific adverse events. Efforts may be warranted to ensure all persons being offered the J&J vaccine are made aware of the risk of TTS.

In this research note we reflect on our failed attempt to synthesize the community engagement literature through a standard systematic review and explain our rationale for now embarking on a realist synthesis of community engagement in global health research. We believe this paper will be helpful for many who grapple with the lack of clarity about community engagement's core elements and mechanisms.