Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure.

INTRODUCTION: Achieving effective community engagement has been an objective of U.S. National Institutes of Health-funded HIV research efforts, including participation of persons with HIV. Community Advisory Boards (CABs) have remained the predominant model for community engagement since their creation in 1989. As HIV cure-directed research efforts have grown into larger academic-industry partnerships directing resources toward both basic and clinical research under the Martin Delaney Collaboratories (MDC), community input models have also evolved. The BEAT-HIV MDC Collaboratory, based at The Wistar Institute in Philadelphia, United States, implemented a three-part model for community engagement that has shown success in providing greater impact for community engagement across basic, biomedical, and social sciences research efforts. DISCUSSION: In this paper, we review the case study of the formation of the BEAT-HIV Community Engagement Group (CEG) model, starting with the historical partnership between The Wistar Institute as a basic research center and Philadelphia FIGHT as a not-for-profit community-based organization (CBO), and culminating with the growth of community engagement under the BEAT-HIV MDC. Second, we present the impact of a cooperative structure including a Community Advisory Board (CAB), CBO, and researchers through the BEAT-HIV CEG model, and highlight collaborative projects that demonstrate the potential strengths, challenges, and opportunities of this model. We also describe challenges and future opportunities for the use of the CEG model. CONCLUSIONS: Our CEG model integrating a CBO, CAB and scientists could help move us towards the goal of effective, equitable and ethical engagement in HIV cure-directed research. In sharing our lessons learned, challenges and growing pains, we contribute to the science of community engagement into biomedical research efforts with an emphasis on HIV cure-directed research. Our documented experience with implementing the CEG supports greater discussion and independent implementation efforts for this model to engage communities into working teams in a way we find a meaningful, ethical, and sustainable model in support of basic, clinical/biomedical, social sciences and ethics research.

HIV biomedical research groups have prioritized community support and representation as exemplified by the creation of Community Advisory Boards (CABs). Most CABs bring diverse stakeholders to advise on research objectives as part of their activities. The BEAT-HIV Delaney Collaboratory, based at The Wistar Institute in Philadelphia, is a research program created in 2016 to advance HIV cure research. To better engage communities beyond the CAB, the BEAT-HIV Delaney Collaboratory created a Community Engagement Group (CEG) model composed of three distinct components. First, the involvement of a community-based organization (CBO) introduces the historical know-how and relationship with the community. Philadelphia FIGHT fulfills the CBO role as a provider of primary care, education, advocacy, and research support for persons with HIV. Second, the BEAT-HIV CAB provides individual experiences and community input into HIV cure research and gives updates to the broader community about the status of research. Third, basic, clinical/biomedical, and social scientists implement the scientific goals of the BEAT-HIV Collaboratory. In this paper, we aimed to highlight the strengths, challenges, lessons learned, and opportunities of the BEAT-HIV CEG model. We also present examples of collaborative community engagement projects. Our paper contributes to the literature on novel community engagement approaches beyond the CAB. Based on our experience to date using the CEG, a multi-part community engagement model could help move us towards the goal of inclusive, effective, equitable, and ethical engagement in HIV cure research.

"I Know That I Was a Part of Making a Difference": Participant Motivations for Joining a Cure-Directed HIV Trial with an Analytical Treatment Interruption.

Analytical treatment interruption (ATI), defined as a closely monitored clinical pause in antiretroviral therapy (ART), is a core component of many HIV cure-directed clinical studies. ATIs may cause significant physical and psychosocial risks for people living with HIV and, as a result, integrating participant and community perspectives into clinical trial designs that include an ATI is crucial to ensuring a successful and person-centered trial. We conducted semi-structured interviews with participants enrolling in the BEAT-2 cure-directed trial (NCT03588715). Interviews elicited participant motivations and decision-making processes for trial participation along with participants' perceptions of the ATI. Interviews were recorded, transcribed, and analyzed using a directed content analysis. Fourteen of 15 trial participants completed interviews. The majority were Black (79%) cisgender male (79%). Participants noted several significant motivating factors contributing to their desire to enroll in the HIV cure-directed clinical trial, the most prominent being a desire to find a cure for HIV and help others in the HIV community. HIV care teams were the most commonly identified resource for patients when making the decision to enroll in the trial, and family, friends, and romantic partners also played a significant role. Altruism was a primary motivation for participation, although participants also shared interest in learning about HIV science and research. Participants had a strong understanding of trial procedures and displayed significant trust in the study team to keep them informed and healthy during their participation. The ATI was a significant source of anxiety for participants. Their primary worry was that their prior antiretroviral therapy (ART) regimen would no longer be effective once they resumed ART. Despite these concerns, participants shared considerable excitement for continued participation in the trial and being a part of the search toward an HIV cure.

Invisibility of "Gender Dysphoria".

Tension between naming gender dysphoria to render an important kind of suffering among transgender people more visible and avoiding pathologizing experiences of transgender people in a gender-binary world can be keenly felt among patients seeking gender-affirming services. This article suggests why clinical "verification" of a patient's need for gender-affirming care is likely less important than clinicians' expressions of empathy and respect for patients' autonomy. This article also suggests that fostering transgender patients' sense of agency should be prioritized.

Hair at the intersection of dermatology and anthropology: A conversation on race and relationships.

Less than 3% of pediatric dermatologists identify as Black, meaning that the vast majority of Black dermatology patients in the United States are being treated by dermatologists who do not share personal hair management experience and cultural symbolism around tightly coiled hair. We cannot, and should not, wait for racial concordance so that Black physicians treat all Black patients. A powerful alternative solution is listening to and learning from others' experience relating to the importance of hair in molding one's identity and emerging autonomy. Representing both clinical and anthropologic lenses and stemming from a conversation between the authors, this article reflects this approach and is intended to stimulate conversation so that in the absence of shared experiences, all patients with tightly coiled hair have access to culturally humble, effective, and ethical care.

The Intersection of Urban and Global Health.

Providers from high-income countries are often drawn to practicing medicine in settings identified as having greater need, whether that be in a low- or middle-income country or within an underserved area within their own high-income country. Despite sharing the goal of fostering health equity, global health and urban health are often considered in dichotomous ways. This article points a lens at the intersection of these 2 fields, highlighting what they can learn from each other.

Meaning Making and Religious Engagement Among Survivors of Childhood Brain Tumors and Their Caregivers.

PURPOSE: To describe how adolescent and young adult survivors and their mother-caregivers ascribe meaning to their post-brain tumor survivorship experience, with a focus on sense making and benefit findings and intersections with religious engagement. PARTICIPANTS & SETTING: Adolescent and young adult survivors of childhood brain tumors and their families, living in their community settings. METHODOLOGIC APPROACH: Secondary analysis of simultaneous and separate individual, semistructured interviews of the 40 matched dyads (80 total interviews) occurred using conventional content analysis across and within dyads. Meaning is interpreted through narrative profiles of expectations for function and independence. FINDINGS: Participants made sense of the brain tumor diagnosis by finding benefits and nonbenefits unique to their experiences. Meaning was framed in either nonreligious or religious terms. IMPLICATIONS FOR NURSING: Acknowledging positive meaning alongside negative or neutral meaning could enhance interactions with survivors, caregivers, and their families. Exploring the meaning of their experiences may help them to reconstruct meaning and reframe post-tumor realities through being heard and validated.

Mother-caregiver expectations for function among survivors of childhood brain tumors.

PURPOSE: Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers' expectations about survivors' function and how expectations connect to ongoing management and decision-making. METHODS: Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors. RESULTS: Five main themes emerged as integral to mother-caregiver expectations: realizing a difference in the survivor, noticing limitations to independence in the survivor, memories of learning about clinical prognoses as understood from consent meetings and education, managing these realizations, and acknowledging unresolved challenges. CONCLUSIONS: Caregiver expectations are influenced by both initial clinical interactions and contemporary family dynamics and require individual- and family-specific survivorship planning. As caregiver expectations can influence management behaviors that impact outcomes and possibly independence, implications for clinician-caregiver shared decision-making are substantial.

Expectations for function and independence by childhood brain tumors survivors and their mothers.

Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment-related sequelae. Little is known, however, about the role of expectation for survivors' function. From a mixed-methods study including qualitative interviews and quantitative measures from 40 caregiver-survivor dyads, we compared the data within and across dyads, identifying four distinct narrative profiles: (A) convergent expectations about an optimistic future, (B) convergent expectations about a less optimistic future, (C) non-convergent expectations about a less optimistic future, and (D) non-convergent expectations about an unclear future. Dyads both do well and/or struggle in systematically different manners in each profile. These profiles may inform the design of interventions to be tested in future research and help clinicians to assist families in defining, (re-)negotiating, and reaching their expectations of function and independence.

How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States.

OBJECTIVE: To examine the role of the practitioner, informed consent, and genetic counseling in genetic testing decisions and to assess their relative influence on women's decision to have clinical BRCA1/2 testing. METHODS: Qualitative study using in-depth open-ended interviews with 68 women who had considered clinical BRCA1/2 testing. RESULTS: Slightly less than half of the women who had considered BRCA1/2 testing were found to have had a clear and preexisting desire to test or not to test, irrespective of practitioner attitude or advice. CONCLUSION: The decision to accept or decline genetic testing is the result of a complex process that goes beyond interactions between health care providers and patients, indicating a caution against exclusive reliance on informed consent or counseling encounters.

To tell or not to tell: primary care patients' disclosure deliberations.

BACKGROUND: Literature on patient disclosure has highlighted policy proposals, practitioner attitude and practices, and issues specific to already identified vulnerable populations (eg, human immunodeficiency virus-positive patients and adolescents). We investigated the topics and concerns that led less-studied primary care patients to deliberate disclosure to their physician and the range of actions taken following such deliberation. METHODS: This descriptive qualitative study used semistructured in-depth interviews with 85 self-selected female primary care patients recruited from 2 hospital-associated primary care practices and through advertisements in local newspapers. RESULTS: Topics that led subjects to deliberate over disclosure included sex, sexually transmitted diseases, reproductive health, drug use, mental health, and domestic circumstances. Concerns prompting this deliberation fell into 2 categories. The first, extraindividual concerns, included fear of information circulating to employers or insurance companies and the need to disclose for adequate treatment. The second, intrapersonal concerns, centered on feelings of comfort, embarrassment, or shame in the act of disclosing during the clinical encounter. While the majority of women did eventually disclose all or part of the information in question, a significant minority did not disclose. There were no significant demographic differences associated with patterns of disclosure. CONCLUSIONS: Primary care patients have concerns that affect and sometimes limit disclosure. Physicians are encouraged to explore patients' concerns about the uses and circulation of medical information, as well as anxiety over anticipated shame or embarrassment at the moment of information disclosure to physicians. This is especially important in primary care settings, where failure to disclose can mean lack of referral to needed specialized care.

Patient perspectives of medical confidentiality: a review of the literature.

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality. DESIGN: Studies were found by searching medline, bioethicsline, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients' confidentiality views and conduct were included. MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information. CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.