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Background: Many patients with diabetic kidney disease (DKD) do not receive evidence-based, guideline-recommended treatment shown to reduce DKD progression and complications. Proactive electronic consultations (e-consults) are an emerging intervention strategy that could potentially allow nephrologists to provide timely and evidence-based guidance to primary care providers (PCPs) engaged in early DKD care., Methods: The objective of this study was to explore perspectives about potential barriers and facilitators associated with a proactive e-consult program to improve DKD care delivery. We conducted semi-structured qualitative interviews with PCPs across three different health systems. Interview transcripts were reviewed in a rapid qualitative analysis approach to iteratively identify, refine, and achieve consensus on a final list of themes and subthemes., Results: A total of 18 interviews were conducted. PCPs across all sites identified similar challenges to delivering guideline-recommended DKD care. PCPs were supportive of the proactive e-consult concept. Three major themes emerged surrounding (1) perceived potential benefits of proactive e-consults, including educational value and improved specialist access; (2) concerns about the proactive nature of e-consults, including the potential to increase PCP workload and the possibility that e-consults could be seen as documenting substandard care; and (3) leveraging of care teams to facilitate recommended DKD care, such as engaging clinic-based pharmacists to implement specialist recommendations from e-consults., Conclusion: In this pre-implementation qualitative study, PCPs noted potential benefits and identified concerns and implementation barriers for proactive e-consults for DKD care. Strategies that emerged for promoting successful implementation included involving clinic support staff to enact e-consult recommendations and framing e-consults as a system improvement effort to avoid judgmental associations., (© 2024. The Author(s).)

This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of "taking out" brain tissue whereas RNS patients highlighted the reversibility of "putting in" a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: To investigate the role of patients' personal social networks (SNs) in accessing head and neck cancer (HNC) care through patients' and health care workers' (HCWs) perspectives., Study Design: Qualitative study., Setting: Tertiary HNC centers at 2 academic medical centers, including 1 safety net hospital., Methods: Patients with newly diagnosed HNC, and HCWs caring for HNC patients, aged ≥18 years were recruited between June 2022 and July 2023. Semistructured interviews were conducted with both patients and HCWs. Inductive and deductive thematic analysis was performed with 2 coders (κ = 0.82) to analyze the data., Results: The study included 72 participants: 42 patients (mean age 57 years, 64% female, 81% white), and 30 HCWs (mean age 42 years, 77% female, 83% white). Four themes emerged: (1) Patients' SNs facilitate care through various forms of support, (2) patients may hesitate to seek help from their networks, (3) obligations toward SNs may act as barriers to seeking care, and (4) the SN composition and dedication influence care-seeking., Conclusion: Personal SNs play a vital role in prompting early care-seeking among HNC patients. SN-based interventions could enhance care and improve outcomes for HNC patients., (© 2023 American Academy of Otolaryngology-Head and Neck Surgery Foundation.)

Objectives: To explore the context in which older men navigate treatment for stress urinary incontinence (SUI) following prostate surgery by characterizing lived experience of men with symptomatic SUI., Subjects/patients and Methods: Mixed method study using surveys and semistructured interviews to examine a cohort of men who underwent evaluation for treatment of postprostatectomy SUI., Results: Thirty-six men were interviewed after consultation for SUI and 31 had complete quantitative clinical data. Twenty-six underwent surgery and 10 chose no surgical intervention. In qualitative interviews, respondents experienced substantial decline in quality of life due to incontinence citing concerns associated with use of pads and worrying about incontinence. Most patients reported "workarounds"-efforts to mitigate or manage incontinence including Kegels, physical therapy, and garments. Participants also reported lifestyle changes including less strenuous physical activity, less sexual activity, and/or fewer social gatherings. Patients then described a "breaking point" where incontinence workarounds were no longer sufficient. After seeking evaluation, men described challenges in exploring treatment for SUI, including access to care and provider knowledge of treatment options., Conclusion: In a novel study of patients living with SUI a predictable lived experience was observed that culminated in a desire for change or "breaking point." In all men, this led to treatment-seeking behaviors and for many it led to SUI intervention. Despite effective treatments, patients continue to meet barriers gaining access to SUI evaluation and treatment., (© 2023 Wiley Periodicals LLC.)

Importance: Although the barriers to dementia care in primary care are well characterized, primary care practitioner (PCP) perspectives could be used to support the design of values-aligned dementia care pathways that strengthen the role of primary care., Objective: To describe PCP perspectives on their role in dementia diagnosis and care., Design, Setting, and Participation: In this qualitative study, interviews were conducted with 39 PCPs (medical doctors, nurse practitioners, and doctors of osteopathic medicine) in California between March 2020 and November 2022. Results were analyzed using thematic analysis., Main Outcomes and Measures: Overarching themes associated with PCP roles in dementia care., Results: Interviews were conducted with 39 PCPs (25 [64.1%] were female; 16 [41%] were Asian). The majority (36 PCPs [92.3%]) reported that more than half of their patients were insured via MediCal, the California Medicaid program serving low-income individuals. Six themes were identified that convey PCPs' perspectives on their role in dementia care. These themes focused on (1) their role as first point of contact and in the diagnostic workup; (2) the importance of long-term, trusting relationships with patients; (3) the value of understanding patients' life contexts; (4) their work to involve and educate families; (5) their activities around coordinating dementia care; and (6) how the care they want to provide may be limited by systems-level constraints., Conclusions and Relevance: In this qualitative study of PCP perspectives on their role in dementia care, there was alignment between PCP perspectives about the core values of primary care and their work diagnosing and providing care for people living with dementia. The study also identified a mismatch between these values and the health systems infrastructure for dementia care in their practice environment.

Importance: There is substantial institutional variability in the intensity of end-of-life care that is not explained by patient preferences. Hospital culture and institutional structures (eg, policies, practices, protocols, resources) might contribute to potentially nonbeneficial high-intensity life-sustaining treatments near the end of life., Objective: To understand the role of hospital culture in the everyday dynamics of high-intensity end-of-life care., Design, Setting, and Participants: This comparative ethnographic study was conducted at 3 academic hospitals in California and Washington that differed in end-of-life care intensity based on measures in the Dartmouth Atlas and included hospital-based clinicians, administrators, and leaders. Data were deductively and inductively analyzed using thematic analysis through an iterative coding process., Main Outcome and Measure: Institution-specific policies, practices, protocols, and resources and their role in the everyday dynamics of potentially nonbeneficial, high-intensity life-sustaining treatments., Results: A total of 113 semistructured, in-depth interviews (66 women [58.4%]; 23 [20.4%] Asian, 1 [0.9%] Black, 5 [4.4%] Hispanic, 7 [6.2%] multiracial, and 70 [61.9%] White individuals) were conducted with inpatient-based clinicians and administrators between December 2018 and June 2022. Respondents at all hospitals described default tendencies to provide high-intensity treatments that they believed were universal in US hospitals. They also reported that proactive, concerted efforts among multiple care teams were required to deescalate high-intensity treatments. Efforts to deescalate were vulnerable to being undermined at multiple points during a patient's care trajectory by any individual or entity. Respondents described institution-specific policies, practices, protocols, and resources that engendered broadly held understandings of the importance of deescalating nonbeneficial life-sustaining treatments. Respondents at different hospitals reported different policies and practices that encouraged or discouraged deescalation. They described how these institutional structures contributed to the culture and everyday dynamics of end-of-life care at their institution., Conclusions and Relevance: In this qualitative study, clinicians, administrators, and leaders at the hospitals studied reported that they work in a hospital culture in which high-intensity end-of-life care constitutes a default trajectory. Institutional structures and hospital cultures shape the everyday dynamics by which clinicians may deescalate end-of-life patients from this trajectory. Individual behaviors or interactions may fail to mitigate potentially nonbeneficial high-intensity life-sustaining treatments if extant hospital culture or a lack of supportive policies and practices undermine individual efforts. Hospital cultures need to be considered when developing policies and interventions to decrease potentially nonbeneficial, high-intensity life-sustaining treatments.

Objective: To investigate which treatment attributes matter to patients with stress urinary incontinence (SUI), why and how they matter, and the context in which patients consider treatment attributes. Nearly a quarter of older men have decisional regret following SUI treatment. Knowledge of what matters to patients when making SUI treatment decisions is necessary to improve goal-concordant care., Methods: We conducted semi-structured interviews with 36 men ≥65 years of age with SUI. Semi-structured interviews were conducted by telephone and transcribed. Four researchers (L.H., N.S., E.A., C.B.) coded the transcripts using both deductive and inductive codes to identify and describe treatment attributes., Results: We identified 5 patient-derived treatment attributes of interest among older men with SUI who have faced treatment decisions: (1) dryness, (2) simplicity, (3) potential need for future intervention, (4) treatment regret/satisfaction, and (5) surgical avoidance. These themes reliably emerged in our patient-centered interviews from within various contexts, including prior negative healthcare experiences, the impact of incontinence on daily and quality of life, and the mental health burden of incontinence, among others., Conclusion: Men with SUI weigh a variety of treatment attributes in addition to dryness, a traditional clinical endpoint, and do so within the context of their individual experience. These additional attributes, such as simplicity, may run counter to the goal of dryness. This suggests that traditional clinical endpoints alone are not adequate for counseling patients. Contextualized patient-identified treatment attributes should be used to create decision-support materials to promote goal-concordant SUI treatment., Competing Interests: DECLARATION OF COMPETING INTEREST All authors declare no potential conflicts of interest., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Frailty is common among urology patients in general as well as among men seeking evaluation for stress urinary incontinence (SUI), with 6.1% of men undergoing artificial urinary sphincter placement considered frail. It is unclear if and how patient views on frailty and incontinence severity impact decision-making with regards to SUI treatment., Methods: We undertook a mixed methods analysis to evaluate the intersection of frailty, incontinence severity, and treatment decision-making is presented. To do so, we utilized a previously published cohort of men undergoing evaluation for SUI at the University of California, San Francisco between 2015 and 2020, selecting those who had evaluation with timed up and go test (TUGT), objective measures of incontinence, and patient-reported outcome measures (PROMs). A subset of these participants had additionally undergone semi-structured interviews, and these interviews were re-examined to thematically code them with a focus on the impact of frailty and incontinence severity on SUI treatment decision-making., Results: Among the original cohort of 130 patients, 72 had an objective measure of frailty and were included in our analysis; 18 of these individuals had corresponding qualitative interviews. Common themes identified included (I) impact of incontinence severity on decision-making; (II) the interaction between frailty and incontinence; (III) the impact of comorbidity on treatment decision-making; and (IV) age as a construct of frailty and impact on surgical choice and/or recovery. Direct quotations regarding each theme provides insight into patients' views and drivers of SUI treatment decision-making., Conclusions: The impact of frailty on treatment decision-making for patients with SUI is complex. This mixed methods study highlights the variety of patient views on frailty with regards to surgical intervention for male SUI. Urologists should make a concerted effort to personalize patient counseling for SUI management and take time to understand each patient's perspective in order to individualize SUI treatment decision-making. More research is needed to help identify factors that influence decision-making for frail male patients with SUI., Competing Interests: Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tau.amegroups.com/article/view/10.21037/tau-22-839/coif). The series “Surgical Management of Stress Urinary Incontinence in Men” was commissioned by the editorial office without any funding or sponsorship. BNB reports that Boston Scientific provides partial funding for the Reconstructive Urology fellowship for which he is the Program Director. LAH served as the unpaid Guest Editor of the series, and she reports that she has spoken and consulted on behalf of Boston Scientific. Boston Scientific is the manufacturer of the artificial urinary sphincter device and urethral sling discussed in this paper. The authors have no other conflicts of interest to declare., (2023 Translational Andrology and Urology. All rights reserved.)

Background: Postoperative cognitive dysfunction (POCD) is a concern after anaesthesia and surgery, but preoperative discussion of neurocognitive risks with older patients rarely occurs. Anecdotal experiences of POCD are common in the popular media and may inform patient perspectives. However, the degree of alignment between lay and scientific perspectives on POCD is not known., Methods: We performed inductive qualitative thematic analysis on website user comments publicly submitted under an article entitled, 'The hidden long-term risks of surgery: "It gives people's brains a hard time"', published by the UK-based news source The Guardian in April 2022., Results: We analysed 84 comments from 67 unique users. Themes that emerged from user comments included the importance of functional impact ('Couldn't work … even reading was a struggle'), attribution to a range of causes but particularly the use of general, rather than consciousness-preserving, anaesthesia techniques ('side effects aren't fully understood'), and inadequate preparation and response by healthcare providers ('I would have benefited by being warned')., Conclusions: There is misalignment between professional and lay understandings of POCD. Lay people emphasise subjective and functional impact of symptoms, and express beliefs about the role of anaesthetics in causing POCD. Some patients and caregivers affected by POCD report feeling abandoned by medical providers. In 2018, new nomenclature for postoperative neurocognitive disorders was published, which better aligns with lay perspectives by including subjective complaints and functional decline. Further studies based on newer definitions and public messaging may improve concordance between different understandings of this postoperative syndrome., (Copyright © 2023 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Objectives: Older immigrants of Latin American descent are disproportionately impacted by dementia, yet little is known about their dementia- and brain health-related knowledge. We explored perspectives on brain health and aging in this population to inform the development of culturally-relevant interventions., Methods: Individual, semi-structured interviews were conducted with 30 Spanish-speaking immigrants over 60. Questions addressed knowledge about the brain, perceptions of healthy and unhealthy aging, ideas of how to take care of one's brain, and where knowledge was acquired. Responses were analyzed using thematic analysis., Results: The following themes emerged: (1) Descriptions of the brain varied, from anatomy, cognition, and psychology to disease. (2) Perceptions of healthy aging included independence, memory, emotions, and orientation. (3) Ideas of how to care for the brain included physical, social, and cognitive engagement. (4) Knowledge was acquired in childhood, communities, healthcare settings, careers, and media., Conclusions: Results showed significant variability in knowledge. Findings may be leveraged to improve interventions that address brain health literacy disparities among older Latin American immigrants., Clinical Implications: Takeaways involve increasing education about the structure and functions of the brain, promoting realistic understandings of what nonnormative brain aging entails, and increasing knowledge of empirically-supported maintenance approaches. Dissemination may be increased via healthcare providers, community centers, churches, and media.

Introduction: The patient's voice in shared decision-making has progressed from physician's office to regulatory decision-making for medical devices with FDA's Patient Preference Initiative. A discrete-choice preference measure for upper limb prosthetic devices was developed to investigate patient's risk/benefit preference choices for regulatory decision making., Methods: Rapid ethnographic procedures were used to design a discrete-choice measure describing risk and benefits of osseointegration with myoelectric control and test in a pilot preference study in adults with upper limb loss. Primary outcome is utility of each choice based conjoint (CBC) attribute using mixed-effects regression. Utilities with and without video, and between genders were compared., Results: Strongest negative preference was for avoiding infection risk (B = -1.77, p < 0.001) and chance of daily pain (B = -1.22, p , 0.001). Strongest positive preference was for attaining complete independence when cooking dinner (B = 1.62, p < 0.001) and smooth grip patterns at all levels (B = 1.62, B = 1.28, B = 1.26, p < 0.001). Trade-offs showed a 1% increase in risk of serious/treatable infection resulted in a 1.77 decrease in relative preference. There were gender differences, and where video was used, preferences were stronger., Conclusions: Strongest preferences were for attributes of functionality and independence versus connectedness and sensation but showed willingness to make risk-benefit trade-offs. Findings provide valuable information for regulatory benefit-risk decisions for prosthetic device innovations., Trial Registration: This study is not a clinical trial reporting results of a health care intervention so is not registered., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2023.)

Background: Newer "closed-loop" neurostimulation devices in development could, in theory, induce changes to patients' personalities and self-perceptions. Empirically, however, only limited data of patient and family experiences exist. Responsive neurostimulation (RNS) as a treatment for refractory epilepsy is the first approved and commercially available closed-loop brain stimulation system in clinical practice, presenting an opportunity to observe how conceptual neuroethical concerns manifest in clinical treatment. Methods: We conducted ethnographic research at a single academic medical center with an active RNS treatment program and collected data via direct observation of clinic visits and in-depth interviews with 12 patients and their caregivers. We used deductive and inductive analyses to identify the relationship between these devices and patient changes in personality and self-perception. Results: Participants generally did not attribute changes in patients' personalities or self-perception to implantation of or stimulation using RNS. They did report that RNS affected patients' experiences and conceptions of illness. In particular, the capacity to store and display electrophysiological data produced a common frame of reference and a shared vocabulary among patients and clinicians. Discussion: Empirical experiences of a clinical population being treated with closed-loop neuromodulation do not corroborate theoretical concerns about RNS devices described by neuroethicists and technology developers. However, closed-loop devices demonstrated an ability to change illness experiences. Even without altering identify and self-perception, they provided new cultural tools and metaphors for conceiving of epilepsy as an illness and of the process of diagnosis and treatment. These findings call attention to the need to situate neuroethical concerns in the broader contexts of patients' illness experiences and social circumstances.

Objectives: Older adults under-enroll in early phase cancer clinical trials. There are limited data on their trial experiences, which hampers our ability to understand potential reasons and responses to under-enrollment. We aimed to explore older adults' experiences and deliberations with phase 1 trials., Materials and Methods: We analyzed 101 in-depth interviews with 39 adults (average 2.6 interviews per participant) about their experiences with phase 1 trials. All respondents were ≥ 65 years and had advanced cancer. Interviews lasted 60-90 min and were audio-recorded, transcribed, and analyzed to identify respondents' understanding of clinical research, perceptions of early phase trials, and experiences with enrollment., Results: Clinical trial participation was an interactive process that unfolded over time. Older adults relied on ongoing guidance and discussion with their oncologist to navigate the process. Respondents were generally interested in life-prolonging therapies, including enrollment in early phase clinical trials, but did not necessarily state this explicitly to their oncologist. While respondents did not mention age as a limitation to trials participation, participants age > 70 were less enthusiastic about participation and more often discussed their quality of life and weighed benefits of trial participation in the context of their remaining months of life., Conclusion: Early phase clinical trial enrollment is complex, and older adults rely on their oncologist to navigate this process. Acknowledging this complexity through shared decision-making may ensure that older adults have appropriate opportunities to enroll in early phase clinical trials and guard against inappropriate under-enrollment., (Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Studies of gender inequities in academic medicine suggest the negative impact of men's networking practices, but little is known about how they shape faculty experiences., Methods: In this qualitative study, in-depth, semi-structured interviews were conducted with 52 women and 52 men academic medicine faculty members at 16 institutions across the US in 2019. Interviews explored participants' experiences and perceptions of gender inequities in academic medicine, including perceptions of men's networking practices. Interviews were recorded and transcribed verbatim, and transcripts were analyzed using a mixture of deductively and inductively generated codes., Findings: Qualitative analysis of interview transcripts identified different dominant themes: (1) Women were often excluded from networking activities dominated by men, (2) Both women and men referred to men's networking practices in academic medicine, and believed they conferred benefits to members and excluded non-members from such benefits, (3) Participation in such networking activities yielded professional advantages, (4) Women made efforts to counteract their exclusion yet identified limits of those efforts., Interpretation: The data suggests that gender inequities in academic medicine might be associated with professional interactions that occur outside of the scope of professional work practices and in formal work sites. Additional research is needed to better understand practices such as informal networking activities and their impact in order to promote gender equity., Competing Interests: The authors report no conflicts of interest., (© 2022 The Author(s).)

Context: The provision of potentially non-beneficial life-sustaining treatments (LSTs) remains a challenging problem. In 2005, legislation in France established an interprofessional process by which non-beneficial LSTs could be withheld or withdrawn, permitting exploration of the effects of such a legally-protected process and its implementation., Objectives: To characterize intensive care unit (ICU) interprofessional team decision-making and consensus-building practices regarding withholding and withdrawing of LSTs in two Parisian hospitals and to explore physician and nurse perceptions of and experiences with these practices., Methods: This was an exploratory qualitative study utilizing thematic analysis of semi-structured, in-depth interviews of physicians and nurses purposively sampled based on level of training and experience from two hospitals in Paris, France., Results: A total of 25 participants were interviewed. Participants reported that the two Parisian hospitals in this study have each created an interprofessional process for withholding or withdrawing non-beneficial LSTs, providing insight into how norms of decision-making respond to systems-level legal changes. Participants reported that these processes tended to be consistent across several domains: maintaining unified messaging with patients, empowering nurses to participate in end-of-life decision-making, reducing moral distress provoked by end-of-life decisions, and shaping the ethical milieu within which end-of-life decision-making takes place., Conclusions: The architecture of the interprofessional process created at two Parisian hospitals and its perceived benefits may be useful to clinicians and policy-makers attempting to establish processes, policies, or legislation directed at withholding or withdrawing potentially non-beneficial LSTs in the United States and elsewhere., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. All rights reserved.)

Background: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer., Objective: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers., Methods: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping., Results: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home., Conclusion: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.

Purpose: This study examined how mentoring relationships may reinforce or mitigate gender inequities in academic medicine., Method: In-depth, semistructured interviews with medical school faculty members (52 women and 52 men) were conducted at 16 institutions across the United States in 2019. Institutions were recruited using a purposive sampling strategy to seek diversity in geography, ownership (private or public), and prestige. Within institutions, purposive sampling was used to recruit equal numbers of women and men and to seek diversity in degree type (MD, PhD), age, and career stage. A coding scheme was developed through iterative analysis of the interview transcripts. All interview transcripts were then coded with the goal of identifying intersections between mentorship and experiences of and responses to gender inequities., Results: Four key themes at the intersection of mentoring relationships and gender inequities were identified. (1) Both women and men became aware of gender inequities in academic medicine through relationships with women mentors and mentees. (2) Both women and men mentors recognized the challenges their female mentees faced and made deliberate efforts to help them navigate an inequitable environment. (3) Both women and men mentors modeled work-family balance and created family friendly environments for their mentees. (4) Some women, but no men, reported being sexually harassed by mentors., Conclusions: This study shows that mentoring relationships may be a context in which gender inequities are acknowledged and mitigated. It also shows that mentoring relationships may be a context in which gender inequities, such as sexual harassment, may occur. Sexual harassment in academic medicine has been widely documented, and gender inequity in academic medicine has proved persistent. While mentoring relationships may have the potential to identify and mitigate gender inequities, this study suggests that this potential remains largely unrealized., (Copyright © 2021 by the Association of American Medical Colleges.)

Objectives: We aimed to investigate ways in which spirituality was conceptualized in relationship to maintaining brain health and healthy aging in a cohort of older adults who immigrated to the United States from diverse regions of Latin America, in order to ultimately develop culturally-tailored brain health promotion approaches., Design: We conducted a qualitative study using semi-structured interviews., Setting: Participants were recruited from community centers and by a memory care center at a large academic medical center., Participants: We interviewed 30 Spanish-speaking immigrants over age 60. Questions addressed perspectives about the brain, aging, and dementia. Interviews were coded for themes., Measurements: Thematic analysis was used to analyze participants' responses., Results: We identified 5 themes: (1) expressing gratitude to God for mental and physical health, (2) putting the onus of life and death in God's hands, (3) using church as a place to socialize and build community as an approach to leading a healthy lifestyle, (4) using prayer as nourishment for the soul and the brain, and (5) gaining inner-peace and calm, and thus maintaining a healthy life, due to a connection with God., Conclusion: The incorporation of customized spiritual interventions may be a mechanism by which to increase the effectiveness of brain health promotion efforts., (Copyright © 2021 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Importance: Gender disparities in career advancement in academic medicine have persisted despite gender parity in medical school matriculation. Although numerous explanations for this gap exist, little is known about women's experiences of promotion and tenure in academic medicine., Objective: To examine women's experiences of promotion and tenure in academic medicine to uncover mechanisms associated with the gender disparity in career advancement., Design, Setting, and Participants: In this qualitative study, 52 in-depth, semistructured interviews with women academic medicine faculty members were conducted in 2019. The 52 participants were drawn from 16 medical schools across the US. Institutions were selected using a purposive sampling strategy to seek diversity of geography and ownership (private or public). Within institutions, purposive and snowball sampling were used to seek diversity with respect to respondents' degree type (MD, PhD, and MD and PhD), age, and career stage. Interview transcripts were analyzed using qualitative thematic analysis. Data analysis was performed from March to December 2020., Main Outcomes and Measures: Themes and subthemes in participants' experiences of promotion and tenure., Results: The 52 women in this study ranged in age from 34 to 82 years (mean [SD] age, 54.0 [10.7] years). Eighteen respondents (34.6%) held an MD, 4 (7.7%) held both an MD and PhD, and 30 (57.7%) held a PhD. Fourteen respondents (26.9%) were assistant professors at the time of the study, 8 (15.4%) were associate professors, and 30 (57.7%) were full professors. Four main themes within participants' experiences of promotion and tenure that pertain to gender inequities were identified: ambiguous or inconsistent criteria for promotion or tenure; lack of standard processes for reviewing applications and making decisions; vulnerability to malicious behavior of senior faculty, department chairs, and division chiefs; and women seeing men have different experiences of advancement., Conclusions and Relevance: The respondents' experiences of promotion and tenure suggest that promotion and tenure processes may be characterized by inconsistency and a lack of oversight, which have the potential to contribute to well-documented patterns of gender disparities in career advancement in academic medicine.

Background: Moral distress is a state in which a clinician cannot act in accordance with their ethical beliefs because of external constraints. Physician trainees, who work within rigid hierarchies and who lack clinical experience, are particularly vulnerable to moral distress. We examined the dynamics of physician trainee moral distress in end-of-life care by comparing experiences in two different national cultures and healthcare systems., Objective: We investigated cultural factors in the US and the UK that may produce moral distress within their respective healthcare systems, as well as how these factors shape experiences of moral distress among physician trainees., Design: Semi-structured in-depth qualitative interviews about experiences of end-of-life care and moral distress., Participants: Sixteen internal medicine residents in the US and fourteen junior doctors in the UK., Approach: The work was analyzed using thematic analysis., Key Results: Some drivers of moral distress were similar among US and UK trainees, including delivery of potentially inappropriate treatments, a poorly defined care trajectory, and involvement of multiple teams creating different care expectations. For UK trainees, healthcare team hierarchy was common, whereas for US trainees, pressure from families, a lack of guidelines for withholding inappropriate treatments, and distress around physically harming patients were frequently cited. US trainees described how patient autonomy and a fear of lawsuits contributed to moral distress, whereas UK trainees described how societal expectations around resource allocation mitigated it., Conclusion: This research highlights how the differing experiences of moral distress among US and UK physician trainees are influenced by their countries' healthcare cultures. This research illustrates how experiences of moral distress reflect the broader culture in which it occurs and suggests how trainees may be particularly vulnerable to it. Clinicians and healthcare leaders in both countries can learn from each other about policies and practices that might decrease the moral distress trainees experience., (© 2020. Society of General Internal Medicine.)

Objectives: The end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care., Design: We conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis., Setting: Academic teaching hospitals in the United States and United Kingdom., Participants: We interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives., Results: Some trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient's goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker., Conclusions: This study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians' ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Intracranial electrophysiological research methods, including those applying electrodes on the cortical surface or in deep structures, have become increasingly important in human neuroscience. They also pose novel ethical concerns, as human studies require the participation of neurological patients undergoing surgery for conditions such as epilepsy and Parkinson's disease. Research participants in this setting may be vulnerable to conflicts of interest, therapeutic misconception, and other threats to valid recruitment and consent. We conducted semi-structured interviews with investigators from NIH-funded studies involving recording or stimulation inside the human skull. We elicited perspectives on study recruitment and consent procedures, and analyzed transcripts using a modified grounded theory approach. We interviewed 26 investigators from 19 separate intracranial electrophysiology studies, who described two study types: opportunity studies ( n  = 15) and experimental trials ( n  = 4). Respondents described significant heterogeneity in recruitment and consent procedures, even among studies employing similar techniques. In some studies, clinician-investigators were specifically barred from obtaining consent, while in other studies clinician-investigators were specifically required to obtain consent; regulatory guidance was inconsistent. Respondents also described various models for subject selection, the timing of consent, and continuing consent for temporally extended studies. Respondents expressed ethical concerns about participants' vulnerability and the communication of research-related risks. We found a lack of consensus among investigators regarding recruitment and consent methods in human intracranial electrophysiology. This likely reflects the novelty and complexity of such studies and indicates a need for further discussion and development of best practices in this research domain.

Sociologists have argued that there is value in incorporating computational tools into qualitative research, including using machine learning to code qualitative data. Yet standard computational approaches do not neatly align with traditional qualitative practices. The authors introduce a hybrid human-machine learning approach (HHMLA) that combines a contemporary iterative approach to qualitative coding with advanced word embedding models that allow contextual interpretation beyond what can be reliably accomplished with conventional computational approaches. The results, drawn from an analysis of 87 human-coded ethnographic interview transcripts, demonstrate that HHMLA can code data sets at a fraction of the effort of human-only strategies, saving hundreds of hours labor in even modestly sized qualitative studies, while improving coding reliability. The authors conclude that HHMLA may provide a promising model for coding data sets where human-only coding would be logistically prohibitive but conventional computational approaches would be inadequate given qualitative foci.

As the coronavirus pandemic started, we rapidly transitioned a preclinical social justice and health systems sciences course at our medical school to asynchronous, remote learning. We describe processes, curricular innovations, and lessons learned. Small groups were converted into independent learning modules and lectures were given live via videoconferencing technology. We started with a simplified approach and then built technological capabilities over time. Current events were incorporated into curriculum and assessment. Our course ran from 16 March-3 April 2020 for the 155-person first-year class. Student attendance for optional, synchronous remote sessions was higher than in-person attendance in previous years. Completion rates for assignments were high but with minimal student collaboration. Faculty office hours were underutilized. Focus group and formal evaluations were largely positive, with numerical ratings for quality of the course and faculty teaching higher than the 2 years prior. Student engagement with social justice topics in aremote format was successful through modifications to small groups and lecture structure. Students, faculty, and administrative staff appreciated the consistency of session format throughout the course. Students exam performance was similar to prior years. Attention should be paid to what can be learned via self-study as opposed to small group learning. Better methods of soliciting real-time student feedback, and encouraging engagement with each other and with faculty in aremote environment are needed.

Background: Poor patient-clinician communication around patient-reported outcomes (PROs) is a barrier to the effective management of rheumatoid arthritis (RA). We aimed to develop an RA 'dashboard' that could facilitate conversations about PROs and that would be acceptable to a wide range of patients, including English and Spanish speakers and patients with adequate or limited health literacy., Methods: A diverse group of RA patients along with clinicians from two academic rheumatology clinics joined separate focus groups. We solicited feedback and made iterative changes to mock-ups of an RA dashboard that visualized PROs using a human-centred design process. We used the thematic analysis method to identify and characterize themes from the focus groups and used these insights to refine the dashboard., Results: We conducted six focus groups involving 25 RA patients and three groups with 11 clinicians. Patients and clinicians agreed that the dashboard could enhance communication about PROs and RA disease activity and could promote patient self-management. Patients varied in their (a) comprehension, (b) preferences for the display and features of the dashboard, and (c) desired uses for the dashboard. Clinicians expressed significant concerns about the logistics of using the dashboard in clinical practice., Conclusion: Using principles of human-centred design, we created an RA dashboard that was well-accepted among patients and clinicians. The ability to customize the data display is important for tailoring the dashboard to patients with diverse needs and preferences. Special attention should be given to feasibility concerns voiced by clinicians., (© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Introduction: Many caregivers of people with dementia experience burden and resulting health effects due to the intensive nature of caregiving. Phone- and web-based care navigation is an innovative model of care that may be useful in addressing caregiver burden in dementia., Methods: Qualitative methods (interviews, focus groups, and case study analysis) were used to identify care navigator approaches used to address caregiver burden in dementia as part of a dementia care navigation program., Results: Care navigators targeted caregiver burden by focusing on strategies to reduce caregiver guilt and frustration, manage patient-related behavior, address caregiver depression, and improve the relationship between the caregiver and person with dementia. The case studies presented demonstrate the ways that care navigators identified patient and caregiver needs and tailored their approaches to meet the specific social, cultural, economic, and geographic contexts of the dyads with which they worked., Discussion: Findings provide insights into strategies used to address caregiver burden through care navigation. Care navigators who speak the same language as the caregivers with whom they work and who have an in-depth understanding of the symptoms of different dementia syndromes may be particularly effective., (© 2020 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals, Inc. on behalf of Alzheimer's Association.)

Purpose: Patients with advanced cancer and oncologists deliberate about early-phase (EP) trials as they consider whether to pursue EP trial enrollment. We have limited information about those deliberations and how they may facilitate or impede trial initiation. This study describes these deliberations and their relationship to trial initiation., Patients and Methods: We collected longitudinal, ethnographic data on deliberations of patients with advanced cancer at two academic medical centers. We used constant comparative and framework analyses to characterize the deliberative process and its relationship to trial initiation., Results: Of 96 patients with advanced cancer, 26% initiated EP enrollment and 19% joined a trial. Constant comparative analysis revealed two foci of deliberation. Setting the stage focused on patient and physician support for EP trial involvement, including patients' interest in research and oncologists' awareness of trials and assessment of patient fit. Securing a seat focused on eligibility for and entrance to a specific trial and involved trial availability, treatment history, disease progression, and enrollment timing. Patients enrolled in a trial only when both stages could be successfully navigated., Conclusion: Ethnographic data revealed two foci of deliberation about EP trial enrollment among patients with advanced cancer. Physician support played a consequential role in both stages, but enrollment also reflected factors beyond the control of any specific individual. Insights from this study, combined with other recent studies of trial enrollment, advance our understanding of the complex process of EP trial accrual and may help identify strategies to improve rates of participation.

The objective of this commentary is to develop a framework for assessing the rigour of qualitative approaches that identifies and distinguishes between the diverse objectives of qualitative health research, guided by a narrative review of the published literature on qualitative guidelines and standards from peer-reviewed journals and national funding organisations that support health services research, patient-centered outcomes research and other applied health research fields. In this framework, we identify and distinguish three objectives of qualitative studies in applied health research: exploratory, descriptive and comparative. For each objective, we propose methodological standards that may be used to assess and improve rigour across all study phases-from design to reporting. Similar to hierarchies of quality of evidence within quantitative studies, we argue that standards for qualitative rigour differ, appropriately, for studies with different objectives and should be evaluated as such. Distinguishing between different objectives of qualitative health research improves the ability to appreciate variation in qualitative studies and to develop appropriate evaluations of the rigour and success of qualitative studies in meeting their stated objectives. Researchers, funders and journal editors should consider how further developing and adopting the framework for assessing qualitative rigour outlined here may advance the rigour and potential impact of this important mode of inquiry., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: The treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients' approaches to treatment decision-making in order to advance understanding of patient influences and supports., Methods: (1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center., Results: Exploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. "Reliant outsiders" relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. "Active insiders" accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies., Conclusion: We identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making.

Background: Care navigation is an approach to personalized care management and care coordination that can help overcome barriers to care. Care navigation has not been extensively studied in dementia, where health care workforce innovations are needed as a result of increasing disease prevalence and resulting costs to the health care system., Objective: To identify facilitators and barriers to care navigation in dementia and to assess dementia caregiver satisfaction with care navigation., Methods: Methods include qualitative research (interviews, focus groups, observations) with "Care Team Navigators" (CTNs) who were part of a dementia care navigation program, the Care Ecosystem, and a quantitative survey with caregivers about their experiences with CTNs. Transcripts were analyzed to identify themes within the data., Results: CTNs identified the following facilitators to care navigation in dementia: working closely with caregivers; providing emotional support; tailoring education and resources; and coordinating with a clinical team around issues ranging from clinical questions to financial and legal decision-making. The barriers CTNS identified included burn-out, the progressive nature of the disease; coordinating with primary care providers; and identifying resources for dyads who are low-income, do not speak English, or live in rural areas. Caregivers across both sites highly rated CTNs, though satisfaction was higher among those in Nebraska and Iowa., Conclusions: Innovative approaches to care delivery in dementia are crucial. Care navigation offers a feasible model to train unlicensed people to deliver care as a way to deliver larger-scale support for the growing population of adults living with dementia and their caregivers.

Objectives: To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions., Design: Focus groups (N=13) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions., Setting: Clinics, support groups and senior centers., Participants: Diverse English- and Spanish-speaking older adults (age: mean 78, range 64-89) and surrogates (age: mean 57, range 33-76) (29% African American, 26% white, 26% Asian or Pacific Islander, 19% Hispanic) (N=69)., Measurements: We used thematic analysis to analyze transcripts., Results: We identified 168 decisions. Older adults from all racial and ethnic groups frequently recalled cancer treatment decisions and decisions about chronic illness management. Surrogates described decisions about transitions in care and medical crises. Older adults valued self-sufficiency and maximizing survival and relied on personal experiences as often as medical advice. In all racial and ethnic groups, surrogates valued avoiding suffering for loved ones., Conclusion: Diverse older adults and surrogates perceive life-threatening illness and day-to-day decisions about chronic disease to be serious, difficult, and important. The surrogates' goal of avoiding suffering of older adults may differ from older adults' priorities of self-sufficiency and maximizing survival. Clinicians should support older adults and surrogates in identifying important and difficult decisions and learn about the values and information sources they bring to decision-making. With this knowledge, clinicians can customize decision support and achieve person-centered care., (© 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.)

Context: The American Medical System is programmed to a default setting of aggressive care for the terminally ill. Institutional norms of decision making have been shown to promote high-intensity care, regardless of consistency with patient preferences. There are myriad factors at a system, clinician, surrogate, and patient level that drive the culture of overly aggressive treatments in American hospitals., Objective: The objective of this study was to understand physician perspective of the ways systems-level factors influence patient, physician, and surrogate perceptions and consequent behavior., Methods: Semi-structured in-depth qualitative interviews with 42 internal medicine physicians across three American academic medical centers were conducted. This qualitative study was exploratory in nature, intended to enhance conceptual understanding of underlying phenomena that drive physician attitudes and behavior., Results: The interviews revealed many factors that contributed to overly aggressive treatments at the end of life. Systemic factors, which describe underlying cultures (including institutional, professional, or community-based cultures), typical practices of care, or systemic defaults that drive patterns of care, manifested its influence both directly and through its impact on patient, surrogate, and physician behaviors and attitudes., Conclusion: Institutional cultures, social norms, and systemic defaults influence both normative beliefs regarding standards of care and treatments plans that may not benefit seriously ill patients., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Replacing standard consent materials with simplified materials is a promising intervention to improve patient comprehension, but there is little evidence on its real-world implementation. We employed a sequential two-arm design to compare the effect of standard versus simplified consent materials on potential donors' understanding of biobank processes and their accrual to an active biobanking program. Participants were female patients of a California breast health clinic. Subjects from the simplified arm answered more items correctly ( p = .064), reported "don't know" for fewer items ( p = .077), and consented to donate to the biobank at higher rates ( p = .025) than those from the standard arm. Replacing an extant consent form with a simplified version is feasible and may benefit patient comprehension and study accrual.

Purpose: Discussions between oncologists and advanced cancer patients (ACPs) may touch on the complex issue of clinical trial participation. Numerous initiatives have sought to improve the quality of these potentially difficult conversations. However, we have limited data about what ACPs know about clinical research as they enter such discussions as, to date, such research has focused on the period following informed consent. This study examines ACPs' understanding of clinical research in the treatment period before consent., Methods: We conducted in-depth interviews with adult ACPs with limited treatment options at four clinics in an academic medical center. So as not to influence patients' perspectives, interviewers probed patients' knowledge of clinical research only if the patient first brought up the topic. Interviews (40-60 min) were audio-recorded, transcribed, and analyzed thematically and via quantitative content analysis by an interdisciplinary team., Results: Of 78 patients recruited, 56 (72%) spontaneously brought up the topic of clinical research during interview and are included in this analysis. Qualitative thematic analysis and quantitative content analysis revealed that patients' knowledge varied in terms of (1) accuracy and (2) specificity (level of detail). ACPs who spoke with high specificity were not always accurate, and ACPs with accurate knowledge included both high- and low-specificity speakers., Conclusions: ACPs' knowledge of clinical research is variable. Patients who can discuss the technical details of their care may or may not understand the broader purpose and procedures of clinical trials. Understanding this variability is important for improving patient-provider communication about clinical research and supporting efforts to provide individualized care for ACPs.

Objective: Enhanced recruitment of patients with advanced cancer (ACP) to early phase (EP) trials is needed. However, selective recruitment may affect the kinds of patients who are recruited. To address whether ACP who initiate EP trial enrollment differ from those who do not, we prospectively surveyed ACP well in advance of potential trial recruitment and followed them over time to identify those who initiated the recruitment process., Methods: EP trial initiation was defined as a patient being referred for screening to an active EP trial. Depression and anxiety were assessed with the Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder Scale (GAD-7), respectively. Demographic and disease characteristics, functional status, and patient preferences regarding decision making were examined as possible predictors of EP trial initiation., Results: Of the 78 advanced cancer patients in the cohort studied, 21 (27%) initiated EP trial participation, while 57 (73%) did not. Of those who initiated this process, 14 (67%) went on to enroll in an EP study. Level of depression severity was associated with EP trial initiation, with rates of initiation nearly three times higher (35% vs. 12%, p = 0.054) among patients with minimal to mild levels of depression compared to those with moderate or higher levels of depression. EP trial initiation was not associated with demographic or socioeconomic variables, cancer type, functional status, quality of life, or decision-making variables., Conclusions: The presence of elevated depressive symptoms may be associated with the EP trial recruitment and enrollment processes. This possible relationship warrants further study. Copyright © 2016 John Wiley & Sons, Ltd., (Copyright © 2016 John Wiley & Sons, Ltd.)

Katherine Possin and colleagues report on the implementation, development, and early findings of the Care Ecosystem, an adaptive, personalized, and scalable dementia care program.

United States-based biorepositories are on the cusp of substantial change in regulatory oversight at the same time that they are increasingly including samples and data from large populations, e.g. all patients in healthcare system. It is appropriate to engage stakeholders from these populations in new governance arrangements. We sought to describe community recommendations for biorepository governance and oversight using deliberative community engagement (DCE), a qualitative research method designed to elicit lay perspectives on complex technical issues. We asked for stakeholders to provide input on governance of large biorepositories at the University of California (UC), a public university. We defined state residents as stakeholders and recruited residents from two large metropolitan areas, Los Angeles (LA) and San Francisco (SF). In LA, we recruited English and Spanish speakers; in SF the DCE was conducted in English only. We recruited individuals who had completed the 2009 California Health Interview Survey and were willing to be re-contacted for future studies. Using stratified random sampling (by age, education, race/ethnicity), we contacted 162 potential deliberants of whom 53 agreed to participate and 51 completed the 4-day DCE in June (LA) and September-October (SF), 2013. Each DCE included discussion among deliberants facilitated by a trained staff and simultaneously-translated in LA. Deliberants also received a briefing book describing biorepository operations and regulation. During the final day of the DCE, deliberants voted on governance and oversight recommendations using an audience response system. This paper describes 23 recommendations (of 57 total) that address issues including: educating the public, sharing samples broadly, monitoring researcher behavior, using informative consent procedures, and involving community members in a transparent process of biobank governance. This project demonstrates the feasibility of obtaining meaningful input on biorepository governance from diverse lay stakeholders. Such input should be considered as research institutions respond to changes in biorepository regulation.

When making health care decisions, patients and consumers use data but also gather stories from family and friends. When advising patients, clinicians consult the medical evidence but also use professional judgment. These stories and judgments, as well as other forms of narrative, shape decision making but remain poorly understood. Furthermore, qualitative research methods to examine narrative are rarely included in health science research. We illustrate how narratives shape decision making and explain why it is difficult but necessary to integrate qualitative research on narrative into the health sciences. We draw on social-scientific insights on rigorous qualitative research and our ongoing studies of decision making by patients with cancer, and we describe new tools and approaches that link qualitative research findings with the predominantly quantitative health science scholarship. Finally, we highlight the benefits of more fully integrating qualitative research and narrative analysis into the medical evidence base and into evidence-based medical practice., (Project HOPE—The People-to-People Health Foundation, Inc.)

Recent methodological debates in sociology have focused on how data and analyses might be made more open and accessible, how the process of theorizing and knowledge production might be made more explicit, and how developing means of visualization can help address these issues. In ethnography, where scholars from various traditions do not necessarily share basic epistemological assumptions about the research enterprise with either their quantitative colleagues or one another, these issues are particularly complex. Nevertheless, ethnographers working within the field of sociology face a set of common pragmatic challenges related to managing, analyzing, and presenting the rich context-dependent data generated during fieldwork. Inspired by both ongoing discussions about how sociological research might be made more transparent, as well as innovations in other data-centered fields, the authors developed an interactive visual approach that provides tools for addressing these shared pragmatic challenges. They label the approach "ethnoarray" analysis. This article introduces this approach and explains how it can help scholars address widely shared logistical and technical complexities, while remaining sensitive to both ethnography's epistemic diversity and its practitioners shared commitment to depth, context, and interpretation. The authors use data from an ethnographic study of serious illness to construct a model of an ethnoarray and explain how such an array might be linked to data repositories to facilitate new forms of analysis, interpretation, and sharing within scholarly and lay communities. They conclude by discussing some potential implications of the ethnoarray and related approaches for the scope, practice, and forms of ethnography.

Biorepositories, or biobanks, provide researchers with access to biological samples and associated data in support of translational research. Efficient operation and ethical stewardship of biobanks involves coordinated efforts among multiple stakeholders including researchers who manage and use the repository, institutional officials charged with its oversight, and patients and volunteers who contribute samples and data. As advancements in translational research increasingly involve more data derived from larger numbers of diverse samples, the size and governance challenges facing biorepositories have grown. We describe an approach to developing efficient and ethical biobank governance that includes all major stakeholders. This model provides a pathway for addressing the technical and ethical challenges that must be resolved to ensure biorepositories continue to support translational research., (© 2015 Wiley Periodicals, Inc.)

Objective: To characterize how providers respond to patient mentions of complementary and integrative medicine (CIM) during routine oncology visits., Methods: Ethnographic methods were used over a two and a half year period with 82 advanced cancer patients and their providers across four oncology clinics. Participant observation fieldnotes were analyzed using Discourse Analysis., Results: CIM was mentioned in 78/229 (34%) of the total observed visits. Patients initiated talk about CIM (76%) more than providers (24%). Patients mentioning CIM may indicate a preference for or interest in non-pharmacological adjunctive treatment options. Providers' responses inhibited further talk in 44% of observations and promoted talk in 56% of observations., Conclusion: How providers respond may indicate their willingness to discuss a range of treatment options and to collaboratively engage in treatment decision-making. Provider responses that inhibited CIM conversation passed on the opportunity to discuss patient preferences, and responses that promoted further conversation helped counsel patients about appropriate CIM use. Promoting discussion did not require additional time or extensive knowledge about CIM., Practice Implications: Providers can facilitate high quality communication without endorsing CIM to help patients make treatment decisions and to evaluate CIM appropriateness in response to patient values and preferences., (Published by Elsevier Ireland Ltd.)

Leaders in medical education have increasingly called for the incorporation of cost awareness and health care value into health professions curricula. Emerging efforts have thus far focused on physicians, but foundational competencies need to be defined related to health care value that span all health professions and stages of training. The University of California, San Francisco (UCSF) Center for Healthcare Value launched an initiative in 2012 that engaged a group of educators from all four health professions schools at UCSF: Dentistry, Medicine, Nursing, and Pharmacy. This group created and agreed on a multidisciplinary set of comprehensive competencies related to health care value. The term "competency" was used to describe components within the larger domain of providing high-value care. The group then classified the competencies as beginner, proficient, or expert level through an iterative process and group consensus. The group articulated 21 competencies. The beginner competencies include basic principles of health policy, health care delivery, health costs, and insurance. Proficient competencies include real-world applications of concepts to clinical situations, primarily related to the care of individual patients. The expert competencies focus primarily on systems-level design, advocacy, mentorship, and policy. These competencies aim to identify a standard that may help inform the development of curricula across health professions training. These competencies could be translated into the learning objectives and evaluation methods of resources to teach health care value, and they should be considered in educational settings for health care professionals at all levels of training and across a variety of specialties.

Although research has shown many benefits of Shared Medical Appointments (SMAs) or group visits, uptake by physicians has been quite limited. The objective of this study was to explore the facilitators and barriers to implementing SMAs in a large multispecialty medical group. This was a comparative analysis of SMAs at 3 geographically distinct, semiautonomous divisions of the medical group based on qualitative themes identified in audio recorded key informant interviews with medical and administrative staff (n=12) involved with the implementation of SMAs. Data were collected by conducting key informant interviews focusing on the SMA implementation process, including motivations, history, barriers, and facilitators. Uptake at the 3 divisions was predicated by differing motivations, facilitators, and barriers. Divisions 1 and 2 allocated necessary resources including management support, a physician champion, expert consults, and support staff. These divisions also overcame physician reluctance and financial sustainability challenges. Despite early interest, Division 3 did not devote the time or resources to overcome initial resistance. Without the impetus of management mandate or a champion's enthusiasm, early attempts of SMA implementation faltered and were abandoned. In these cases, a physician champion, management support, and financial sustainability were judged to be the primary enablers of successful implementations of SMAs. Without these enablers and other contributing factors, implementing SMAs was challenging.

Background: Chronic disease registries have been successful at promoting the delivery of guideline-concordant primary care for patients with diabetes and hypertension, but not for chronic kidney disease (CKD). To understand whether a registry could be designed to improve CKD management in primary care, we explored primary care provider attitudes about the benefits (or lack thereof) of a CKD registry compared with other chronic diseases and the key facilitators of successfully implementing a CKD registry in safety-net primary care., Study Design: Qualitative, using semistructured interviews., Setting & Participants: We conducted and recorded semistructured 1-hour interviews with medical directors and quality improvement champions from safety-net adult primary care clinics in San Francisco., Analytic Approach: Recordings were transcribed and analyzed using a grounded theory approach until thematic saturation was achieved., Results: 20 primary care providers were interviewed. 4 themes relevant to the development of a successful CKD registry for safety-net primary care were identified: (1) provider beliefs that a CKD registry could aid in the delivery of team-based high-quality CKD care; (2) clinic workflow redesign and staffing are key facilitators to successful implementation of a CKD registry; (3) unique complexities of CKD, such as varying etiologies, may limit the use of a CKD registry by nonphysicians; and (4) a CKD registry is aligned with current primary care priorities and health care delivery strategies., Limitations: Small sample size and reliance on clinician leaders within one health care delivery system., Conclusions: A CKD registry directed at the entire health care team, with the functionality to track, standardize, and enhance CKD care through decision support, has the potential to improve the management of CKD in safety-net primary care settings. These data directly informed the development of a CKD registry in these settings in San Francisco., (Copyright © 2014 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Purpose: Recent research and professional guidelines support expanded use of outpatient subspecialty palliative care in oncology, but provider referral practices vary widely. We sought to explore oncologist factors that influence referrals to outpatient palliative care., Methods: Multisite, qualitative interview study at three academic cancer centers in the United States with well-established palliative care clinics. Seventy-four medical oncologists participated in semistructured interviews between February and October 2012. The interview guide asked about experiences and decision making regarding outpatient palliative care use. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine themes related to palliative care referral decisions., Results: We identified three main oncologist barriers to subspecialty palliative care referrals at sites with comprehensive palliative care clinics: persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy, a predominant belief that providing palliative care is an integral part of the oncologist's role, and a lack of knowledge about locally available services. Participants described their views of subspecialty palliative care as evolving in response to increasing availability of services and positive referral experiences, but emphasized that views of palliative care as valuable in addition to standard oncology care were not universally shared by oncologists., Conclusions: Improving provision of palliative care in oncology will likely require efforts beyond increasing service availability. Raising awareness of ways in which subspecialty palliative care complements standard oncology care and developing ways for oncologists and palliative care physicians to collaborate and integrate their respective skills may help.

Purpose: Patient participation in cancer clinical trials is imperative to the advancement of medical science. Physicians play an important role in recruitment by discussing clinical trials with their cancer patients. Patient-physician discussion is influenced by many factors relating to the physician, the patient, and the healthcare system., Methods: Physicians selected from the 2008-2009 American Medical Association Physician Masterfile who practiced in California, Florida, Illinois, or New York and specialized in medical oncology, surgery, or radiation oncology were surveyed about their attitudes and practices with respect to breast cancer clinical trials. Practice types were categorized according to the classifications provided by the American College of Surgeons, and clinical trial and practice addresses were geocoded., Results: Surveys were completed by 706 of 1,534 eligible physicians (46 %). Medical oncologists were more likely than surgical or radiation oncologists to discuss the possibility, benefits, and risks of clinical trial enrollment with their breast cancer patients. Physicians who spent the most time in patient care were least likely to discuss clinical trials with their patients. Distance from a physician's practice to the nearest clinical trial site was inversely associated with referral and recruitment. Perceived barriers to clinical trial participation were associated with greater referral activity suggesting that physicians who were more involved in trials were also more likely to understand barriers to participation., Conclusions: Multilevel interventions may be successful at increasing participation of women in clinical trials.

Objectives: Investigators generally address the ethical dilemma of patients' decisional impairment in Alzheimer disease (AD) research by obtaining consent from alternative or surrogate decision makers ("proxies") as well as assent from patients. How these proxies conceptualize patient assent, or lack of objection, to participate may influence decisions made of the patients' behalf, but has been little studied. This report examines statements of proxies relevant to how they conceptualized assent and dissent to research., Design: Surveys and in-depth interviews of proxies presented with hypothetical scenario related to enrolling relatives with AD in a clinical trial of an investigational drug for AD., Participants: Proxies (n = 25) for people with AD., Measurements: Open-ended and rating-scaled items assessing perspectives on enrollment in research, influences on decision-making, and willingness to override a relative's preferences regarding research participation. Statements with relevance to assent or dissent were coded., Results: Proxies described looking for consistent behavioral or verbal indications of assent versus objection when trying to determine patients' preferences. However, proxies sometimes expressed willingness to override patients' desires in favor of patients' presumed best interests. The amnestic nature of the disorder led some proxies to justify overriding temporary dissent or discomfort in the interest of promoting patients' values. Patients' dependence on their caregivers for decision-making, and caregivers' awareness of their ability to persuade their relatives, also emerged in descriptions of the decision-making process., Conclusions: Proxies' statements regarding a hypothetical research enrollment decision revealed several themes with implications for the concepts of assent and dissent. Proxies may persuade or influence patients to promote the patient's best interests or values. Further work, particularly examining actual decision-making, is warranted to determine how best to operationalize the concepts of assent and dissent in the context of research involving decisionally impaired adults., (Copyright © 2013 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)