It is not just about “the trial”: the critical role of effective engagement and participatory practices for moving the <scp>HIV</scp> research field forward

MacQueen, Kathleen M.; Auerbach, Judith D.

doi:10.1002/jia2.25179

Cited by 18 publications

(13 citation statements)

References 29 publications

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“…CE in general and CABs, more specifically, are often criticized as being ancillary to research. 55 Similarly, resources allocated to the development and management of CE and CABs tend to be limited and are often the first to be cut from study budgets when research priorities are considered. In keeping with resource limitations, it is important to be explicit about what remuneration, if any, can be expected by members of the CABs.…”

Section: The State Of Ce a Problem Of Tokenismmentioning

confidence: 99%

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

Moodley

Beyer

2019

Biopreservation and Biobanking

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Introduction: Community engagement (CE) is an ethical imperative in research, but the knowledge base for what constitutes effective and ethically sound CE is limited. Ubuntu, as a component of responsive communitarianism where communal welfare is valued together with individual autonomy, is useful in furthering our understanding of effective CE and how it could best be achieved. Similarly, a relative solidarity model serves as a compromise between extreme individualism and extreme communalism and is more appropriate in a heterogenous African context. Approaching CE from an Ubuntu philosophical perspective in southern Africa is particularly important in genomic biobanking, given the implications for individuals, families, and communities. Discussion: CE is often implemented in a tokenistic manner as an ancillary component of research. Understanding consent information is challenging where genomic biobanking is concerned due to scientific complexity. We started a process of CE around genomic biobanking and conducted empirical research in an attempt to develop a model to promote effective and ethically sound CE, using relative solidarity to create a nuanced application of Ubuntu. The TRUCE model is an eight-step model that uses social mapping to identify potential communities, establishes the scope of CE, and requires that communities are approached early. Co-creation strategies for CE are encouraged and co-ownership of knowledge production is emphasized. Recruiting and engaging communities at each stage of research is necessary. Evaluation and adaptation of CE strategies are included. Discussion and dissemination of results after the research is completed are encouraged. Conclusions: There is a significant gap between the theory of CE and its authentic application to research in Africa. This Ubuntu-inspired model facilitates bridging that gap and is particularly suited to genomic biobanking. The CE model enhances and complements the consent process and should be integrated into research as a funding and regulatory requirement where applicable.

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Section: The State Of Ce a Problem Of Tokenismmentioning

confidence: 99%

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

Moodley

Beyer

2019

Biopreservation and Biobanking

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“…For example, the UNAIDS/AVAC, 2011 ethical guidelines were developed to improve collaboration, communication and efficient use of resources. In practice however, community engagement is employed to ensure the smooth implementation of off-shored research (MacQueen & Auerbach, 2018 ): it does not empower local communities to resolve the inequities of power relationships as off-shored research itself is dependent on inequality to function (Sunder Rajan, 2017 ).…”

Section: Discussionmentioning

confidence: 99%

HIV prevention clinical trials’ community engagement guidelines: inequality, and ethical conflicts

Foláyan

Peterson

2020

Global Bioethics

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In 2004 and 2005, the first clinical trials were launched to investigate the use of tenofovir for HIV prevention in Cambodia, Cameroon, Nigeria and Thailand. Controversies erupted over the ethical integrity of the research protocol. We reflect on the events that led to the controversies and identified that scientific and ethical concerns raised by members of local communities at each of these sites were erased by trialists, causing crisis that led to premature shut down the early PrEP trials. In the aftermath of these trials, the World Health Organisation, UNAIDS, and AVAC developed ethics guidelines intended to recognize the concerns as authentic, and developed guidelines to improve researchers' engagement of communities in biomedical HIV prevention trial design and implementation. Our findings suggest that the ethics guidelines are limited in its ability to address power inequalities that leads to voice erasures and non-recognition of local competencies. Rather the ethical documents enabled trialists to gain a new sense of authority through the interpretations of ethical research conduct enabling trialists regain power that can further entrench inequality and voice erasures. To address concerns with what seems an intractable problem, we suggested models of engagement for off-shored research may be the option.

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“…The study results highlighted that HIV stigma could affect PrEP uptake and use. As countries move from clinical trials and demonstration projects to real-world oral PrEP delivery, it will be essential to engage communities to promote acceptance and minimize stigmatization of PrEP [29]. Given the impetus on trials to adhere to the Good Participatory Practice (GPP) Guidelines, it is not surprising that trials employed extensive community engagement strategies [30, 31].…”

Section: Discussionmentioning

confidence: 99%

Reaching at-risk women for PrEP delivery: What can we learn from clinical trials in sub-Saharan Africa?

et al. 2019

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Introduction ARV-based pre-exposure prophylaxis (PrEP) has the potential to avert many new HIV infections, yet little is known about how to reach women at high risk for HIV infection and motivate them to initiate PrEP. Clinical trials have succeeded in recruiting at-risk participants, evidenced by control arm HIV incidence ≥3% (defined by the World Health Organization as “substantial risk”). We examined experiences from HIV prevention trials to document recruitment strategies and identify practical, potentially effective strategies for reaching women in real-world PrEP delivery. Methods We conducted semi-structured qualitative phone interviews with 31 staff from five countries who had worked on one or more of seven ARV-based HIV prevention clinical trials. Questions explored recruitment strategies used to reach women at risk of HIV and to successfully communicate about PrEP (inclusive of oral and vaginal formulations). We structurally coded data in NVivo and analyzed codes to derive themes. We conducted results interpretation webinars with research and programmatic stakeholders to validate findings and develop recommendations. Results Clinical trial researchers employed a range of recruitment strategies to recruit at-risk women. They recommended engaging the local community and potential PrEP users via community events, meetings with gatekeepers, and use of community advisory boards; and they encouraged interpersonal communication like presentations in waiting rooms and door-to-door recruitment to address personal concerns and prevent misinformation. Participants also stressed the importance of addressing the challenges that already exist within the health system to create a more enabling environment and delivering positive messages through a variety of communication channels to normalize PrEP. Conclusions Findings from this study provide important insights into potentially effective ways for countries currently rolling out oral PrEP to reach at-risk women with information about PrEP and promote uptake.

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It is not just about “the trial”: the critical role of effective engagement and participatory practices for moving the HIV research field forward

Cited by 18 publications

References 29 publications

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

HIV prevention clinical trials’ community engagement guidelines: inequality, and ethical conflicts

Reaching at-risk women for PrEP delivery: What can we learn from clinical trials in sub-Saharan Africa?

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