Challenges of Patient Engagement in an HIV Clinical Research Program: A Qualitative Analysis of Stakeholder Accounts

Lessard, David; Engler, Kim; Vicente, Serge; Beznoska, Martin; Lebouché, Bertrand

doi:10.1177/2374373520975728

Cited by 3 publications

(1 citation statement)

References 11 publications

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“…[46][47][48][49] Attention to structural level drivers of health inequity is a key element of patient-centered-care 50,51 and a critical component of meaningful community engagement. 52,53 Anecdotal evidence suggests that study personnel are sometimes reluctant to enroll women whom they perceive as potentially unable to complete the study and likely to leave the study prematurely which would reflect poorly on the enrolling clinical site. A 2007 survey of ACTG study coordinators and nurses found that women, people color, and people with a history of injection drug use were perceived as less interested in research-a perception that seems likely to influence study personnel's recruitment decisions.…”

Section: Lesson 1: Success In Engaging Women Requires Funding and Institutional Supportmentioning

confidence: 99%

Impact of dedicated women’s outreach workers (WOWs) on recruitment of women in ACTG clinical studies

Barr

Dubé²,

Swaminathan

et al. 2021

HIV Research & Clinical Practice

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Background: Despite efforts by the AIDS Clinical Trials Group (ACTG) to enroll representative numbers of diverse women, participation in ACTG studies in the United States remains largely white and male. To address this gap in women's participation in ACTG research, a one-year pilot study of dedicated women's outreach workers (WOWs) was proposed. Objectives: included demonstrating that targeted recruitment efforts can expand community awareness of ACTG research and ensuring successful enrollment of women at the respective clinical research sites. Methods: The pilot study was conducted at two U.S. sites (Rutgers

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Section: Lesson 1: Success In Engaging Women Requires Funding and Institutional Supportmentioning

confidence: 99%

Impact of dedicated women’s outreach workers (WOWs) on recruitment of women in ACTG clinical studies

Barr

Dubé²,

Swaminathan

et al. 2021

HIV Research & Clinical Practice

View full text Add to dashboard Cite

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Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach

Salmi,

Otis-Green,

Hayden

et al. 2024

Neuro-Oncology Practice

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Background Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods. Methods Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed “essential elements” of brain cancer PC services. Results We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients’ unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services. Conclusions The brain tumor community calls for research testing PC service models for patients that incorporate the “essential elements” of palliative care.

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Patient and Public Involvement in HIV research: a mapping review and development of an online evidence map

Jackson-Perry,

Cart-Richter,

Haerry

et al. 2024

Preprint

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Introduction: Increasing evidence indicates the benefits of patient and public involvement (PPI) in medical research, and PPI is increasingly expected by funders and publishers. We conducted a mapping review of studies reporting examples of PPI implementation in HIV research, and developed an online evidence map to guide researchers in the planning of PPI in HIV research projects. Methods: We systematically searched Medline and Embase up until March 16, 2023, including search terms with variations for PPI and HIV. We extracted information from identified studies in duplicate and analysed the data descriptively and qualitatively to describe types of PPI models and report benefits, challenges, and mitigation strategies. This study was co-initiated and co-led by people living with HIV. PPI was embedded into all parts of the research process, and we report and reflect on our own PPI experience in this study. Results: We identified twelve studies reporting PPI in HIV research between 1992 and 2020. Most PPI examples informed clinical trials, but also qualitative research, questionnaire development, research priority setting and surveys. Only six studies described the number and characteristics of PPI members involved. We observed four PPI models, from a model that solely engaged PPI members for a specific task to a model whereby PPI representatives were integrated into the study team with decision-making authority. Benefits reported included wider dissemination of research results, better understanding of research material and results, and higher levels of trust and learning between researcher and communities. Most reported challenges were lack of specific resources for PPI, levels of knowledge and expertise, risk of disclosure, and diversity of the PPI team. We embedded PPI from study inception onwards, which probably pre-empted some of the challenges reported in the reviewed examples. Conclusions: This mapping review summarizes published examples of PPI in HIV research for various phases of research. There is clear need to strengthen the reporting on PPI processes in HIV research, e.g., by following the GRIPP2 guidelines, and to develop guidance on its hands-on implementation. The resulting online evidence map is a starting point to guide researchers on how to integrate PPI in their own research.

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Challenges of Patient Engagement in an HIV Clinical Research Program: A Qualitative Analysis of Stakeholder Accounts

Cited by 3 publications

References 11 publications

Impact of dedicated women’s outreach workers (WOWs) on recruitment of women in ACTG clinical studies

Impact of dedicated women’s outreach workers (WOWs) on recruitment of women in ACTG clinical studies

Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach

Patient and Public Involvement in HIV research: a mapping review and development of an online evidence map

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