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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. [ABSTRACT FROM AUTHOR]

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. (Population Health Management 2014;17:100-105) [ABSTRACT FROM AUTHOR]

Background: Language and culture relate in complex ways. Addressing this complexity in the context of language translation is a challenge when caring for patients with limited English proficiency (LEP).Objective: To examine processes of care related to language, culture and translation in an LEP population is the objective of this study.Design: We used community based participatory research to examine the experiences of Russian-speaking cancer patients in San Francisco, California. A Russian Cancer Information Taskforce (RCIT), including community-based organizations, local government, and clinics, participated in all phases of the study.Participants: A purposeful sample of 74 individuals were the participants of the study.Approach: The RCIT shaped research themes and facilitated access to participants. Methods were focus groups, individual interviews, and participant observation. RCIT reviewed data and provided guidance in interpreting results.Results: Four themes emerged. (1) Local Russian-language resources were seen as inadequate and relatively unavailable compared to other non-English languages; (2) a taboo about the word "cancer" led to language "games" surrounding disclosure; (3) this taboo, and other dynamics of care, reflected expectations that Russian speakers derived from experiences in their countries of origin; (4) using interpreters as cultural brokers or establishing support groups for Russian speakers could help address barriers.Conclusions: The language barriers experienced by this LEP population reflect cultural and linguistic issues. Providers should consider partnering with trained interpreters to address the intertwining of language and culture. [ABSTRACT FROM AUTHOR]

The article offers information on the EngageUC project supported by the U.S. National Institutes of Health (NIH). Topics include the project's aim to engage stakeholders in California in biobank research, the use of the California Health Interview Survey to identify a representative sample of participants, and the "Precision Medicine" initiative of U.S. President Barack Obama. It also mentions downstream biobank governance and community oversight of data access.

1. Identify how hospital cultures influence intensity of end-of-life care 2. Propose hospital policies, practices, and resources that foster hospital cultures that mitigate burdensome end-of-life care There is significant institutional variability in the intensity of end-of-life (EOL) care that is unexplained by patient preferences. Hospital culture and individual practice variations may contribute to burdensome or unwanted life-sustaining treatments near the EOL. To understand how hospital cultures influence the intensity of EOL care. A comparative ethnographic study was conducted at four academic hospitals in California and Washington. Hospitals were selected for differences in intensity of EOL care (e.g., high, medium, and low) based on the Dartmouth Atlas. Semistructured, in-depth interviews were conducted with 112 clinicians, hospital staff, and administrators between December 2018 and December 2020. Data were deductively and inductively analyzed using thematic analysis through a team-based, iterative coding process. There was a universal default of high-intensity care at all four sites; respondents recognized this as the norm in American healthcare. This default required respondents to use active and concerted efforts to de-escalate high-intensity EOL care, even when treatments were not consistent with patients' goals. Respondents at high-intensity hospitals described attempts to de-escalate high-intensity, goal-discordant care that were thwarted at multiple points during a patient's care trajectory. Conversely, hospital-specific resources, policies, and practices at hospitals whose culture favored low-intensity EOL care facilitated de-escalation. The aggregate tendency of a hospital's environment to either favor or thwart clinician attempts to de-escalate high-intensity EOL care is a foundational feature of different cultures of intensities of care. Hospital cultures influence the intensity of EOL care through policies, practices, and resources that either facilitate or discourage resistance to a prevailing culture of high-intensity care in American medicine. Interventions that target individual behaviors or interactions are insufficient to mitigate burdensome EOL care because extant hospital cultures will undermine their impact. Consideration of systemic drivers of high-intensity care should be incorporated into palliative care interventions. [ABSTRACT FROM AUTHOR]