OBJECTIVES:Labeling and the use of model cards have been promoted as ways to increase transparency for multiple end users. This study aimed to identify key content for a health artificial intelligence (AI) tool label based on public perspectives and expectations. STUDY DESIGN:We used a mixed-methods study design, combining public deliberation and pre-/post surveys to inform participants about AI in health care and gather input on key information for a health AI tool label. METHODS:In 2024, we conducted 5 virtual community deliberations across Michigan, engaging 159 participants in facilitated small-group discussions that were qualitatively coded. Participants completed a 20-minute survey before and after the deliberation to assess changes in knowledge, attitudes, and trust regarding AI in health care. RESULTS:Participants prioritized information regarding privacy and security, health equity, and safety and effectiveness of AI tools for inclusion on a health AI tool label. An AI label is, therefore, a familiar and transparent mechanism to build trust and address patients' desire for notification. CONCLUSIONS:The findings highlight ethical gaps in using AI in health care settings and the value of publicly informed, patient-centered solutions. There is strong demand for clear, accessible information on how AI tools are used and their risks and benefits. A patient-informed label may address these ethical challenges and improve transparency, trust, and patient-centered communication as AI reshapes health care.

The increasing use of artificial intelligence (AI) in healthcare has heightened public focus on issues of trust, transparency, and governance. In this study, we conducted five virtual community deliberations with Michigan residents (n = 159) to explore their hopes, concerns, and perspectives on how to promote trustworthiness in health AI. Participants were predominantly female (65

BACKGROUND:Despite major shifts in U.S. federal government data sharing requirements, their impact, and relation to researcher choice of database, are underexplored. This study surveyed genetic researchers regarding trends, priorities, perceptions of quality, impact on research outcomes, and genomic data sharing and use across government, consortium, and private databases. METHODS:As part of an exploratory sequential mixed methods project, we surveyed 294 U.S.-based genomic academic researchers. RESULTS:Genetic researchers generally have a choice between databases, which allows them to prioritize data quality. This might explain recent trends toward the use of government and consortium databases away from private ones. Respondents reported several significant differences in the requirements that different data stewards place on them, which impact their work. Private data stewards generally had the most restrictions and were the least likely to allow users to release the full dataset at completion, despite over 50% of respondents reporting the use of federal funds for such research. Our findings indicate that upstream benefits (i.e., access, database features) are more impactful on researchers' choice in databases than downstream publication limitations (e.g., co-authorship, limited data release). Respondents also reported the time necessary to share data as the biggest barrier to contributing to government databases and non-comprehensiveness as the biggest challenge to using existing government data. CONCLUSIONS:The federal government can leverage these findings about researcher priorities to continue attracting researchers, to push forward goals related to open science and enabling advances for patients underrepresented in genetic research, and to found new genomic data sharing policy moving forward.

ABSTRACT Introduction The integration of artificial intelligence (AI) tools in healthcare offers significant opportunities to improve patient care. However, underrepresented groups such as the Arab/Middle Eastern North African (MENA) community in the United States have historically been excluded in health data and conversations regarding AI tool implementation and development. We present our experience with the Arab/MENA community exploring attitudes about the use of AI in healthcare, focusing on our engagement and recruitment efforts as well as relevance for learning health systems science. Methods We conducted a virtual democratic deliberation session (n = 33) in partnership with the Arab Community Center for Economic and Social Services (ACCESS) in Michigan, as part of a larger study involving five sessions (n = 159). In partnership with ACCESS staff, we collaboratively developed study materials and recruited Arab/MENA community members to share their perspectives on AI in healthcare. Qualitative thematic analysis was used to identify the community's perspectives, priorities, and barriers to the use of AI in healthcare. Results The deliberation session highlighted four key themes related to the use of AI tools: (1) transparency in AI development was viewed as essential to building community trust, (2) human connection, with concerns that increased reliance on AI could replace empathy and weaken patient‐provider interactions, (3) the role of healthcare providers, with preference on providers using AI as a supportive tool rather than replacing direct care, and (4) representation due to concerns over whether AI systems would reflect the experiences and needs of the Arab/MENA community in healthcare. Conclusions Community‐based partnerships are essential for advancing responsible AI implementation in healthcare and building a learning health system. Our experiences highlight the importance of transparency, cultural sensitivity, and meaningful community involvement to build trust and address the needs of underrepresented groups as AI evolves.

Background and objectivesShared decision making (SDM) is a patient-centered approach for conditions where multiple, preference-sensitive treatment options exist and there is no single best choice. Eosinophilic esophagitis (EoE), an increasingly prevalent chronic immune-mediated disease, offers an example of how patients and physicians use SDM to navigate the challenging tradeoffs of weighing pharmacologic and dietary therapies. We aimed to identify communication challenges for SDM in EoE care from physician and patient perspectives and to explore how patient treatment preference archetypes influence SDM.Research design and methodsWe conducted a qualitative study with one-on-one, semi-structured interviews with adult patients with EoE and physicians. Patients (n = 35) were recruited from a single academic center (mean age 41 years [(SD 15.2]; 51% male; predominantly White 83%). Physicians included gastroenterologists (n = 9) and allergists (n = 7) from varied practices across Michigan. Interview guides were informed by the Theoretical Domains Framework and iteratively refined. Interview transcripts were coded using both deductive and inductive strategies and analyzed thematically via descriptive content analysis.ResultsThree central themes emerged: 1) Patients often lack knowledge or have misconceptions about EoE and its treatments, but differed in how and from where they want to gain disease-focused information, 2) Physicians generally supported SDM, but patients varied in how they want to be involved in decisions about their care, and 3) Both patients and physicians wanted accurate and user-friendly informational resources about EoE to support effective communication and SDM.ConclusionsOur analysis revealed that patients with EoE have diverse preferences for disease-related learning, decision making, and communication. There is a clear need for accurate, accessible, and personalized information to improve patient-physician understanding and communication, without which SDM and patient-centered care in EoE cannot be achieved. What we learned can be applied to other health conditions where there is clinical equipoise between various effective management options.

Workplace genetic testing (wGT) is an evolving model for genetic testing where employees are offered consumer genetic testing through employer-sponsored wellness programs. However, the potential harms, benefits, and key characteristics for best implementation practices for wGT have yet to be defined. To address this issue, we conducted a three-round modified Delphi process, including multiple rounds of survey and a virtual deliberative workshop, with purposely chosen wGT stakeholders (employees, employers, ethical, legal, and social implications [ELSI] professionals, genetic testing industry representatives, and healthcare professionals) to share their perspectives. From the modified Delphi process, we identified 12 key characteristics for the implementation of wGT that were perceived to increase the potential for benefit while reducing the risk of potential harms. Most participants agreed that privacy/security, voluntariness, transparency, understanding and education, anti-discrimination, employee control, and evidence-based testing measures were both important (>90%) and necessary (>75%) for the implementation of wGT. However, some participants also expressed a lack of confidence in the likelihood of achieving these characteristics in wGT programs. Overall, stakeholders expressed qualified support for wGT at the conclusion of the modified Delphi process. Their perspectives on the topic varied over the course of the process and were at least partially contingent on whether the aforementioned 12 key characteristics were met. These findings help inform the establishment of a normative framework for wGT assessment.

As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S. academic genetic researchers (n=23) found that the burden, translation, industry limitations, and consent structure of data sharing remain major governance challenges.

Objective:Kaposi sarcoma is a vascular tumor that affects the pulmonary system. However, the diagnosis of airway lesions suggestive of pulmonary Kaposi sarcoma (pKS) is reliant on bronchoscopic visualization. We evaluated the role of Kaposi sarcoma herpesvirus (KSHV) viral load in bronchoalveolar lavage (BAL) as a diagnostic biomarker in patients with bronchoscopic evidence of pKS and evaluated inflammatory cytokine profiles in BAL and blood samples.Design:In this retrospective study, we evaluated KSHV viral load and cytokine profiles within BAL and blood samples in patients who underwent bronchoscopy for suspected pKS between 2016 and 2021.Methods:KSHV viral load and cytokine profiles were obtained from both the circulation and BAL samples collected at the time of bronchoscopy to evaluate compartment-specific characteristics. BAL was centrifuged and stored as cell pellets and KSHV viral load was measured using primers for the KSHV K6 gene regions.Results:We evaluated 38 BAL samples from 32 patients (30 with HIV co-infection) of whom 23 had pKS. In patients with airway lesions suggestive of pKS, there was higher KSHV viral load (median 3188 vs. 0 copies/106 cell equivalent; P = 0.0047). A BAL KSHV viral load cutoff of 526 copies/106 cells had a sensitivity of 72% and specificity of 89% in determining lesions consistent with pKS. Those with pKS also had higher IL-1 beta and IL-8 levels in BAL. The 3-year survival rate for pKS patients was 55%.Conclusion:KSHV viral load in BAL shows potential for aiding in pKS diagnosis. Patients with pKS also have evidence of cytokine dysregulation in BAL.

Importance Use of low-value care is common among older adults. It is unclear how to best engage clinicians and older patients to decrease use of low-value services. Objective To test whether the Committing to Choose Wisely behavioral economic intervention could engage primary care clinicians and older patients to reduce low-value care. Design, Setting, and Participants Stepped-wedge cluster randomized clinical trial conducted at 8 primary care clinics of an academic health system and a private group practice between December 12, 2017, and September 4, 2019. Participants were primary care clinicians and older adult patients who had diabetes, insomnia, or anxiety or were eligible for prostate cancer screening. Data analysis was performed from October 2019 to November 2023. Intervention Clinicians were invited to commit in writing to Choosing Wisely recommendations for older patients to avoid use of hypoglycemic medications to achieve tight glycemic control, sedative-hypnotic medications for insomnia or anxiety, and prostate-specific antigen tests to screen for prostate cancer. Committed clinicians had their photographs displayed on clinic posters and received weekly emails with alternatives to these low-value services. Educational handouts were mailed to applicable patients before scheduled visits and available at the point of care. Main Outcomes and Measures Patient-months with a low-value service across conditions (primary outcome) and separately for each condition (secondary outcomes). For patients with diabetes, or insomnia or anxiety, secondary outcomes were patient-months in which targeted medications were decreased or stopped (ie, deintensified). Results The study included 81 primary care clinicians and 8030 older adult patients (mean [SD] age, 75.1 [7.2] years; 4076 men [50.8%] and 3954 women [49.2%]). Across conditions, a low-value service was used in 7627 of the 37 116 control patient-months (20.5%) and 7416 of the 46 381 intervention patient-months (16.0%) (adjusted odds ratio, 0.79; 95% CI, 0.65-0.97). For each individual condition, there were no significant differences between the control and intervention periods in the odds of patient-months with a low-value service. The intervention increased the odds of deintensification of hypoglycemic medications for diabetes (adjusted odds ratio, 1.85; 95% CI, 1.06-3.24) but not sedative-hypnotic medications for insomnia or anxiety. Conclusions and Relevance In this stepped-wedge cluster randomized clinical trial, the Committing to Choose Wisely behavioral economic intervention reduced low-value care across 3 common clinical situations and increased deintensification of hypoglycemic medications for diabetes. Use of scalable interventions that nudge patients and clinicians to achieve greater value while preserving autonomy in decision-making should be explored more broadly. Trial Registration ClinicalTrials.gov Identifier: NCT03411525

Importance Genetic researchers must have access to databases populated with data from diverse ancestral groups to ensure research is generalizable or targeted for historically excluded communities. Objective To determine genetic researchers' interest in doing research with diverse ancestral populations, which database stewards offer adequate samples, and additional facilitators for use of diverse ancestral data. Design, Setting, and Participants This survey study was conducted from June to December 2022 and was part of an exploratory sequential mixed-methods project in which previous qualitative results informed survey design. Eligible participants included genetic researchers who held US academic affiliations and conducted research using human genetic databases. Exposure Internet-administered survey to genetic research professionals. Main Outcomes and MeasuresThe survey assessed respondents' experience and interest in research with diverse ancestral data, perceptions of adequacy of diverse data across database stewards (ie, private, government, or consortia), and identified facilitators for encouraging use of diverse ancestral data. Descriptive statistics, chi 2 tests, and z tests were used to describe respondents' perspectives and experiences. Results A total of 294 researchers (171 men [58.5%]; 121 women [41.2%]) were included in the study, resulting in a response rate of 20.4%. Across seniority level, 109 respondents (37.1%) were senior researchers, 85 (28.9%) were mid-level researchers, 71 (24.1%) were junior researchers, and 27 (9.2%) were trainees. Significantly more respondents worked with data from European ancestral populations (261 respondents [88.8%]) compared with any other ancestral population. Respondents who had not done research with Indigenous ancestral groups (210 respondents [71.4%]) were significantly more likely to report interest in doing so than not (121 respondents [41.2%] vs 89 respondents [30.3%]; P < .001). Respondents reported discrepancies in the adequacy of ancestral populations with significantly more reporting European samples as adequate across consortium (203 respondents [90.6%]), government (200 respondents [89.7%]), and private (42 respondents [80.8%]) databases, compared with any other ancestral population. There were no significant differences in reported adequacy of ancestral populations across database stewards. A majority of respondents without access to adequate diverse samples reported that increasing the ancestral diversity of existing databases (201 respondents [68.4%]) and increasing access to databases that are already diverse (166 respondents [56.5%]) would increase the likelihood of them using a more diverse sample. Conclusions and Relevance In this survey study of US genetic researchers, respondents reported existing databases only provide adequate ancestral samples for European populations, despite their interest in other ancestral populations. These findings suggest there are specific gaps in access to and composition of genetic databases, highlighting the urgent need to boost diversity in research samples to improve inclusivity in genetic research practices.

INTRODUCTION:Little is known about how patients make decisions about and prioritize therapies and disease management in eosinophilic esophagitis (EoE). We aimed to systematically identify and characterize patient perspectives and attitudes that influence decision making for EoE management. METHODS:To understand the diverse attitudes and values of patients with EoE, we designed a study using the Q-method. We iteratively developed 31 statements related to EoE disease management. Participants sorted statements by ranking from +4 (most agree) to -4 (most disagree). By-person factor analysis, using 2-factor and 3-factor rotation, revealed distinct preference archetypes. RESULTS:Thirty-four adults with EoE (mean age 40.9 years, 51.4% male, 82.9% White) were recruited from gastroenterology and allergy clinics from a single center. We identified 2 treatment-centered archetypes: Medication preference, driven by symptoms and the desire to minimize risk of complications and Natural treatment preference , focusing on identifying trigger foods and diet adherence. Three-factor analysis revealed an additional archetype: Treatment ambivalent, a view of EoE as a mild and episodic (not chronic) disease with low priority to treat. Comparison by factor revealed 54% of those in the natural preference archetype were recategorized as treatment ambivalent , suggesting that they see natural treatment as a less complicated or milder strategy and may be at risk of nonadherence and reduced treatment uptake. DISCUSSION:We identified 3 distinct treatment preference archetypes among individuals with EoE, underscoring the need for personalized treatment strategies, especially for those favoring natural approaches but masking ambivalence, and may be at risk of nonadherence or loss to follow-up.

AbstractIntroductionSharing patient health information and biospecimens can improve health outcomes and accelerate breakthroughs in medical research. But patients generally lack understanding of how their clinical data and biospecimens are used or commercialized for research. In this mixed methods project, we assessed the impact of communication materials on patient understanding, attitudes, and perceptions.MethodsMichigan Medicine patients were recruited for a survey (n = 480) or focus group (n = 33) via a web‐based research study portal. The survey assessed the impact of mode of communication about health data and biospecimen sharing (via an informational poster vs. a news article) on patient perceptions of privacy, transparency, comfort, respect, and trust. Focus groups provided in‐depth qualitative feedback on three communication materials, including a poster, FAQ webpage, and a consent form excerpt.ResultsAmong survey respondents, the type of intervention (poster vs. news) made no statistically significant difference in its influence on any characteristic. However, 95% preferred that Michigan Medicine tell them about patient data and biospecimen research sharing versus hearing it from the news. Focus group participants provided additional insights, discussing values and perceptions of altruism and reciprocity, concerns about commercialization, privacy, and security; and the desire for consent, control, and transparency.ConclusionDeveloping our understanding of patient data‐sharing practices and integrating patient preferences into health system policy, through this work and continued exploration, contributes to building infrastructure that can be used to support the development of a learning health system across hospital systems nationally.

Abstract Background Biosimilars are highly similar, but not identical, versions of originator biologic medications. Switching patients to biosimilars presents an opportunity to mitigate rising drug costs and expand patient access to important biologic therapies. However, decreased patient acceptance and adherence to biosimilar medications have been reported, which can lead to loss of treatment response, adverse reactions, and inefficient resource utilization. Understanding patient perceptions of biosimilars and biosimilar switching is needed to inform patient-centered care strategies that promote efficient resource utilization. Methods We used democratic deliberation methods to solicit the informed and considered opinions of patients regarding biosimilar switching. Patients with inflammatory bowel disease (IBD; n = 29) from the Veterans Health Administration (VHA) participated in 5-hour deliberation sessions over two days. Following educational presentations with experts, participants engaged in facilitated small group discussions. Transcripts and facilitators’ notes were used to identify key themes. Participants completed surveys pre- and post-deliberation to collect sociodemographic and clinical features as well as to assess IBD treatment knowledge and attitudes toward care and approaches to biosimilar switching. Results Five major themes emerged from the small group discussions in the context of biosimilar switching: 1) concerns about adverse consequences and unclear risk-benefit balance; (2) importance of communication and transparency; (3) desire for shared decision making and patient involvement in treatment decisions; (4) balancing cost-saving with competing priorities; and (5) advocating for individualized care and prioritization based on risk levels. These views led participants to favor approaches that prioritize switching the sickest patients last (i.e., those with poorly controlled disease) and that offer patients control and choices around biosimilar switching. Participants also expressed preferences for combining elements of different approaches to maximize fairness. Conclusions Approaches to biosimilar switching should consider patients’ desires for transparency and effective communication about biosimilar switching and engagement in their medical decision-making as part of patient-centered care. Incorporating patient preferences around biosimilar switching is critical when navigating the quality and affordability of care in resource constrained settings, both within the VHA and in other healthcare systems.

Abstract Background Workplace genetic and/or genomic testing (wGT) is one of many options that employers can offer within the scope of voluntary workplace wellness programs, though we know little about how many employers are offering this benefit, or what kinds of testing are included. Methods Our landscaping review sought to discover the prevalence and distribution of wGT within voluntary wellness programs among U.S. companies using three approaches: (1) analysis of publicly available information; (2) national surveys; and (3) interviews with company representatives. Results In total, 50/420 (11.9%) companies we investigated had publicly available data suggesting that they offer wGT to their employees. Survey data weighted to be representative of the type and distribution of U.S. companies suggest that ~1% of U.S. companies offer wGT to their employees. Conclusion Our research found little evidence of broad uptake of wGT among U.S. companies, though information gathering was challenging.

Purpose: Gender-based discrimination and sexual harassment have been well-studied in the fields of science, technology, engineering, math, and medicine. However, less is known about these topics and their effect within the profession of medical physics. We aimed to better understand and clarify the views and experiences of practicing medical physicists and medical physics residents regarding gender-based discrimination and sexual harassment. Methods and Materials: We conducted in-depth, semistructured, and confidential interviews with 32 practicing medical physicists and medical physics residents across the United States. The interviews were broad and covered the topics of discrimination, mentorship, and work/life integration. All participants were associated with a department with a residency program accredited by the Commission on Accreditation of Medical Physics Education Programs and had appointments with a clinical component. Results: Participants shared views about gender-based discrimination and sexual harassment that were polarized. Some perceived that discrimination and harassment were a current concern within medical physics, while some either perceived that they were not a concern or that discrimination positively affected women and minoritized populations. Many participants shared personal experiences of discrimination and harassment, including those related to unequal compensation, discrimination against mothers, discrimination during the hiring process, gender-biased assumptions about behaviors or goals, communication biases, and overt and persistent sexual harassment.

BACKGROUND:Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap.OBJECTIVE:We aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences.METHODS:We conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey.RESULTS:After deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences.CONCLUSIONS:Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.