Community concerns about the ethics of molecular HIV surveillance in public health practice
There has been long-standing concern by individuals living with HIV and their advocates regarding Molecular HIV Surveillance (MHS) due to a lack of informed consent, lack of consistent protections for sensitive data, and criminalization within the context of stigma, structural racism, and medical mistrust. Recently, a group of researchers supported by NIAID chose to pause publication of their study results in response to those concerns, which aimed to describe HIV transmission patterns stratified by age, race, and ethnicity among men who have sex with men in King County, Washington. In a subsequent publication, the researchers discuss the process and questions they considered when using data sourced from MHS.
The researchers engaged the community by holding two public‐facing online presentations, met with a national community coalition that included representatives of networks of people living with HIV, and invited two members of this coalition to provide feedback their research manuscript. During each of these meetings, they gave a brief presentation of the research, including the methods, results, and conclusions. They then explicitly solicited feedback on the perceived public health benefit and potential harms of their analyses and results.
Community concerns raised included inference of transmission directionality and implied criminalization. Community members also expressed concerns related to informed consent regarding the collection and use of MHS data for academic purposes, when the original purpose for bypassing informed consent was to facilitate timely public health action. The authors also received feedback that clustering analyses by race/ethnicity could reinforce harmful stereotypes and reminders about the importance of considering the larger behavioral and social context of stigma and structural racism. The study authors were also guided by the Belmont Report, the Denver Principles, and the recommendations of the NIH Working Group in Ethical Issues in HIV Phylogenetic Research in their decision.
In conclusion, the authors noted that decision to pause publication of their results was aimed at mitigating these risks and the risk of eroding trust between phylogenetics researchers and communities of people living with HIV. Additionally, they note that addressing criminalization and including people living with HIV in decision‐making processes has the potential to meaningfully address community concerns and strengthen the ethical justification for using MHS data in both research and public health practice.
Citation:
Tordoff DM, Minalga B, Trejo A, Shook A, Kerani RP, Herbeck JT. Lessons learned from community engagement regarding phylodynamic research with molecular HIV surveillance data. J Int AIDS Soc. 2023 Jul;26 Suppl 1(Suppl 1):e26111. doi: 10.1002/jia2.26111. PMID: 37408448; PMCID: PMC10323319.
Use of advance care planning video tools to support adolescents and young adults with advanced cancer
Adolescent and young adult patients (AYAs) with cancer often receive intensive end-of-life (EoL) medical care. There is a lack of knowledge regarding the communication between AYAs and their caregivers about their preferences and goals of end-of-life care, thus potentially resulting in discrepancies in care received and the patients’ wishes. Advance care planning tools have been developed to facilitate conversations regarding end-of-life care preferences, however these tools are still clinically underutilized in this population. A recent study supported by NCI aimed to determine if intensive end-of-life care is goal-concordant for AYAs diagnosed with advanced cancer.
Researchers conducted a dual site, 1:1 randomized controlled trial of a novel video-based advanced care planning tool. They recruited 50 dyads of patients aged 18 to 39 years and their caregivers for whom they assessed individual advanced care planning readiness, knowledge, and preferences for future care pre, post, and at 3 months after the intervention, and compared congruence and decision conflict outcomes within and between the dyads. Half of the dyads enrolled in the study were randomized to the video intervention, and half to usual care.
Participants primarily identified as female, white, and non-Hispanic. At baseline, a majority of the dyad members (86%) identified life-prolonging preintervention as their overall goal; this number decreased at postintervention (42% patients, 52% caregivers). Advanced care planning knowledge and advanced care readiness (patients only) increased from preintervention to postintervention among the intervention group, compared to the control group. Decision-related conflict was significantly reduced from preintervention to postintervention: 96% of intervention participants found the video helpful, 89% were comfortable watching the video, and 93% indicated they would recommend the video to other patients facing similar decisions regarding advance care planning.
While these are positive findings, the study has some limitations, including limited generalizability due to a lack of racial and ethnic diversity among the participants. Additionally, as both control and treatment interventions were found to have a positive effect, given the shift in care preferences for both groups, replication studies might be conducted to assess whether or not the treatment intervention provides significantly better outcomes for different groups in similar settings. The researchers suggest that future studies might benefit from including a communication training component for providers and assessing longer-term outcomes, including EoL care delivery and clinical documentation.
In summary, this study indicates that videos may be a useful tool to inform AYAs and caregivers about end-of-life care options and promote advanced care planning discussions.
Citation:
Snaman JM, Feifer D, Helton G, Chang Y, El-Jawahri A, Volandes AE, Wolfe J. A Pilot Randomized Trial of an Advance Care Planning Video Decision Support Tool for Adolescents and Young Adults with Advanced Cancer. J Natl Compr Canc Netw. 2023 Jul;21(7):715-723.e17. doi: 10.6004/jnccn.2023.7021. PMID: 37433434.
The impact of epistemic injustice on patients with intersecting, marginalized identities in a clinical setting
Previous research has shown that racial inequities exist in healthcare and adversely impact patients experiencing serious illness and end of life care. These inequities result in disproportionately high health care costs, high symptom burden, and poor quality of life at end of life among Black patients. These inequities have previously been attributed to differences in spirituality and religion, health literacy, and mistrust of the healthcare system. A recent study supported by NIMHD and others sought to explore potential associations between the experience of racism in a clinical setting and patient-clinician communication and decision-making.
In this study, the researchers conducted one-on-one semi structured interviews with 25 Black patients who presented with serious illnesses at an academic medical center in an urban area of Washington State between 2021 and 2023. The discussion points raised at the one-on-one semi-structured interviews included patients’ experiences with racism in a clinical setting, the impact of those experiences on communication with clinical staff, and the ways in which those experiences impacted care-related decision-making for these patients. The framework and process of this qualitative study was structured using Public Health Critical Race Praxis, and the study followed the Consolidated Criteria for Reporting Qualitative Research guidelines for reporting.
Participants skewed male (80%), with an age range of 50 to 70 years, the mean age being 62 (+/- 10 years). Electronic Health Record (EHR) data was used to screen for participants who were 18 years or older, had no record of cognitive dysfunction, and had a diagnosis associated with an average life expectancy of 2 years or less. Only patients who self-identified as Black/African American were recruited as study participants. The participants completed a survey that included the Discrimination in Medical Setting (DMS) scale, Group-Based Medical Mistrust scales, and Microaggressions in Health Care scales. After surveys were administered, those participants who reported experiencing discrimination on any survey sub-scale were asked if they were interested in completing an interview to learn more about their experiences.
Overall, patients disclosed low levels of wealth and educational attainment and achieved low scores on a short-form adult health literacy test. Additionally, patients self-described high levels of medical mistrust and experiencing a high frequency of discrimination and microaggressions that took the form of epistemic injustice, which occurs when healthcare workers and clinical staff minimize or ignore the lived experiences of patients and the knowledge that patients have about their own bodies and illnesses. Patients reported that having aggravating circumstances, such as being unhoused or underinsured, increased their sense of being undervalued and isolated within a clinical setting, which in turn increased their experience of medical mistrust and poor patient-clinician communication.
After coding, three broad qualitative themes were identified: experiences with racism, epistemic injustice, poor communication, and mistreatment, coupled with trauma-informed decision-making. To mitigate these inequities, the researchers suggest recommendations, such as the application of trauma-informed best practices in a clinical setting, improving clinical cultural awareness and workforce diversity, and patient-centered approaches. Limitations of this research include a single setting, small sample size, and the underrepresentation of Black female participants. The authors caution that these findings should not be extrapolated to patients who belong to other minority populations as they have their own experiences of inequities at EoL and may experience racialized healthcare interactions that are specific to their own lived realities.
Citation:
Brown CE, Marshall AR, Snyder CR, Cueva KL, Pytel CC, Jackson SY, Golden SH, Campelia GD, Horne DJ, Doll KM, Curtis JR, Young BA. Perspectives About Racism and Patient-Clinician Communication Among Black Adults with Serious Illness. JAMA Netw Open. 2023 Jul 3;6(7): e2321746. PMID: 37405773; PMCID: PMC10323709.
