Palliative Care Professionals' Perceptions of Communication With Sexual and Gender Minority Patients.

PURPOSE: For sexual and gender minority (SGM) individuals who identify as lesbian, gay, bisexual, transgender, queer, or any other sexual orientation or gender identity (LGBTQ+), the quality of palliative care can depend upon how clinicians view and communicate with this historically minoritized group. Prior literature has demonstrated that SGM patients access care at lower rates, and palliative care clinicians have suggested that SGM patients are more likely to experience discrimination than heterosexual patients. This study examined palliative care clinicians' perspectives and experiences regarding patient communication, care settings, the built environment, and inclusive care for SGM older adults with serious illness. METHODS: The health disparities research framework informed a descriptive qualitative analysis of interview data with palliative care professionals (N = 20) across diverse healthcare settings within Colorado regarding their experiences and beliefs about communication and the care of SGM patients. RESULTS: Three main themes emerged: (1) Limited sexual orientation and gender identity (SOGI) data collection; (2) Organizational and environmental inclusivity, and the "neutral" space viewed as safe; (3) Missing training platforms regarding SGM patients and a lack of opportunity to identify and discuss SGM patient needs. CONCLUSION: Study findings illuminated the following barriers to providing SGM-inclusive care: perspectives around (1) limitations and preferences regarding collection of SOGI data, (2) organizational and environmental inclusivity, and (3) education and training regarding cultural humility and communication with SGM patients. Findings indicate the need for multidimensional research to better understand and address SGM health disparities and promote equitable care.

Piloting the Sexual and Gender Minority Cancer Curricular Advances for Research and Education (SGM Cancer CARE) Workshop: Research Training in the Service of SGM Cancer Health Equity.

The purpose of this study is to describe the context, curriculum design, and pilot evaluation of the educational program "Sexual and Gender Minority Cancer Curricular Advances for Research and Education" (SGM Cancer CARE), a workshop for early-career researchers and healthcare providers interested in gaining knowledge and skills in sexual and gender minority (SGM) cancer research and healthcare advocacy. A needs assessment of a sample of clinicians and researchers (n = 104) and feedback from an Advisory Board informed the curriculum design of the SGM Cancer CARE workshop. Four SGM-tailored modules, focusing on epidemiology, clinical research, behavioral science and interventions, and community-based participatory approaches, were developed and tested in a 2.5-day virtual format among 19 clinicians and researchers. A fifth module to provide feedback to participants on brief presentations about their SGM cancer research ideas or related efforts was added later. A mixed-methods evaluation comprised of pre- and post-modular online evaluation surveys and virtual focus groups was used to determine the degree to which the workshop curriculum met participant needs. Compared to pre-module evaluations, participants reported a marked increase in SGM cancer research knowledge in post-module scores. Quantitative results were supported by our qualitative findings. In open field response survey questions and post-workshop focus groups, participants reported being extremely pleased with the content and delivery format of the SGM Cancer CARE workshop. Participants did regret not having the opportunity to connect with instructors, mentors, and colleagues in person. The SGM Cancer CARE curriculum was shown to increase the knowledge, skills, and level of preparedness of early-career clinicians and scientists to conduct culturally relevant and appropriate research needed to improve care for SGM persons across the cancer care continuum from prevention to survivorship.

A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research.

IMPORTANCE: Research into the genetic and genomic ("genomics") foundations of disease is central to our understanding of disease prevention, early detection, diagnostic accuracy, and therapeutic intervention. Inequitable participation in genomics research by historically excluded populations limits the ability to translate genomic knowledge to achieve health equity and ensure that findings are generalizable to diverse populations. OBSERVATIONS: We propose a novel framework for promoting diversity, equity, and inclusion in genomics research. Building on principles of community-based participatory research and collective impact frameworks, the framework can guide our understanding of the social, cultural, health system, policy, community, and individual contexts in which engagement and genomics research are being done. Our framework highlights the involvement of a multistakeholder team, including the participants and communities to be engaged, to ensure robust methods for recruitment, retention, return of genomic results, quality of engagement, follow-up, and monitoring of participants. CONCLUSIONS AND RELEVANCE: The proposed engagement framework will guide investigators in optimizing equitable representation in research and enhancing the rigor of genomics investigation.

Assessing readiness factors for implementation of LGBTQ+ affirmative primary care initiatives: Practice implications from a mixed-method study.

Introduction: Access and utilization barriers in primary care clinics contribute to health disparities that disproportionately affect lesbian, gay, bisexual, transgender, and queer (LGBTQ+) people. Implementing inclusive practice guidelines in these settings may decrease disparities. The purpose of this exploratory/developmental study is to identify key issues affecting the readiness of primary care clinics to implement such guidelines. Methods: Using a concurrent mixed-method research design, we conducted surveys, interviews, and focus groups with 36 primary care personnel in clinics in New Mexico, USA, to examine readiness to implement LGBTQ+ inclusive guidelines, analyzing factors affecting motivation, general organizational capacity, and innovation-specific capacity. We supplemented these data by documenting LGBTQ+ inclusive policies and practices at each clinic. We undertook descriptive analyses and between-subscale comparisons controlling for within-rater agreement of the survey data and iterative coding and thematic analysis of the qualitative data. Results: Quantitatively, participants reported significantly more openness toward adopting guidelines and attitudinal awareness for developing LGBTQ+ clinical skills than clinical preparedness, basic knowledge, and resources to facilitate implementation. Six themes derived from the qualitative findings corroborate and expand on these results: (1) treating all patients the same; (2) addressing diversity in and across LGBTQ+ populations; (3) clinic climates; (4) patient access concerns; (5) insufficient implementation support; and (6) leadership considerations. Conclusion: This study demonstrates that personnel in primary care clinics support initiatives to enhance service environments, policies, and practices for LGBTQ+ patients. However, drawing on Iris Young's theory of structural injustice, we found that neutralizing discourses that construct all patients as the same and time/resource constraints may diminish motivation and capacity in busy, understaffed clinics serving a diverse clientele and reinforce inequities in primary care for LGBTQ+ people. Efforts are needed to build general and innovation-specific capacities for LGBTQ+ initiatives. Such efforts should leverage implementation teams, organizational assessments, education, leadership support, community engagement, and top-down incentives.

Enhancing primary care services for diverse sexual and gender minority populations: a developmental study protocol.

INTRODUCTION: Compared with heterosexual, cisgender populations, sexual and gender minority (SGM) people are more likely to suffer from serious health conditions and insufficient access to health services. Primary care is at the frontlines of healthcare delivery; yet, few clinics have resources or mechanisms in place to meet SGM patient needs. This developmental study protocol focuses on reducing health disparities among SGM patients by identifying, adapting and developing SGM practice guidelines/recommendations and implementation strategies for primary care clinics in urban and rural New Mexico. Using input from patients, healthcare advocates and providers, and researchers, the study will pilot a practice parameter and implementation toolkit to promote SGM-specific cultural competence at multiple service delivery levels. METHODS AND ANALYSIS: We will recruit providers/staff from four Federally Qualified Health Centers (FQHCs) serving ethnically and geographically diverse communities. Incorporating the Implementation of Change Model and an intersectionality perspective, data collection includes a systematic review of SGM-specific practice guidelines/recommendations, focus groups and semistructured interviews, quantitative surveys and the Nominal Group Technique (NGT) with providers/staff. We will categorise guidelines/recommendations identified through the review by shared elements, use iterative processes of open and focused coding to analyse qualitative data from focus groups, interviews and the NGT, and apply descriptive statistics to assess survey data. Findings will provide the foundation for the toolkit. Focus groups with SGM patients will yield supplemental information for toolkit refinement. To investigate changes in primary care contexts following the toolkit's pilot, we will undertake systematic walkthroughs and document review at the FQHCs, analysing these data qualitatively to examine SGM inclusiveness. The structured data-informed Plan-Do-Study-Act method will enable further revision of the toolkit. Finally, focus groups, interviews and quantitative surveys with providers/staff will highlight changes made in the FQHCs to address SGM patient needs, barriers to sustainment of changes, satisfaction, acceptability, usability and feasibility of the toolkit. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Pacific Institute for Research and Evaluation Institutional Review Board. Informed consent will be obtained from all participants before their involvement in research activities begins. Study results will be actively disseminated through peer-reviewed journals, conference presentations, social media and the internet, and community/stakeholder engagement activities.

Addressing Cancer Disparities in SGM Populations: Recommendations for a National Action Plan to Increase SGM Health Equity Through Researcher and Provider Training and Education.

Reducing health disparities for sexual and gender minority (SGM) people is a priority of the National Institutes of Health. SGM populations face barriers in cancer prevention, treatment, and survivorship care. These barriers are due to deficits in researcher and provider training and education, as well as limited National Cancer Institute funding opportunities directed at the many different SGM populations. SGM status intersects with race and ethnicity, education, geography, and poverty to exacerbate disparities further. SGM cancer research will inform SGM patient cancer care guidelines and promote best practices in care among cancer providers. Cancer professionals may benefit from tailored training to enhance their research readiness for SGM cancer care. Research readiness can promote conduct of high-impact SGM cancer research and expand the limited knowledge of SGM cancer care disparities. Here, we propose a coordinated national plan for the training and education of health science researchers and oncology providers as a key strategy to reduce SGM cancer health disparities experienced along the cancer care continuum. We describe unrecognized clinical cancer care needs of SGM patients and unmet opportunities for research partnership and offer strategies for developing flexible educational training programs, courses, and workshops to prepare researchers and healthcare providers to promote health equity and quality cancer care for members of the SGM community.

Racial/Gender Biases in Student Clinical Decision-Making: a Mixed-Method Study of Medical School Attributes Associated with Lower Incidence of Biases.

BACKGROUND: Accumulating evidence suggests that clinician racial/gender decision-making biases in some instances contribute to health disparities. Previous work has produced evidence of such biases in medical students. OBJECTIVE: To identify contextual attributes in medical schools associated on average with low levels of racial/gender clinical decision-making biases. DESIGN: A mixed-method design using comparison case studies of 15 medical schools selected based on results of a previous survey of student decision-making bias: 7 schools whose students collectively had, and 8 schools whose students had not shown evidence of such biases. PARTICIPANTS: Purposively sampled faculty, staff, underrepresented minority medical students, and clinical-level medical students at each school. MAIN MEASURES: Quantitative descriptive data and qualitative interview and focus group data assessing 32 school attributes theorized in the literature to be associated with formation of decision-making and biases. We used a mixed-method analytic design with standard qualitative analysis and fuzzy set qualitative comparative analysis. KEY RESULTS: Across the 15 schools, a total of 104 faculty, administrators and staff and 21 students participated in individual interviews, and 196 students participated in 29 focus groups. While no single attribute or group of attributes distinguished the two clusters of schools, analysis showed some contextual attributes were seen more commonly in schools whose students had not demonstrated biases: longitudinal reflective small group sessions; non-accusatory approach to training in diversity; longitudinal, integrated diversity curriculum; admissions priorities and action steps toward a diverse student body; and school service orientation to the community. CONCLUSIONS: We identified several potentially modifiable elements of the training environment that are more common in schools whose students do not show evidence of racial and gender biases.

Buffering the Uneven Impact of the Affordable Care Act: Immigrant-serving Safety-net Providers in New Mexico.

We conducted a study in early 2014 to document how the initial implementation of the Affordable Care Act (ACA) affected health care provision to different categories of immigrants from the perspective of health care providers in New Mexico. Though ACA navigators led enrollment, a range of providers nevertheless became involved by necessity, expressing concern about how immigrants were faring in the newly configured health care environment and taking on advocacy roles. Providers described interpreting shifting eligibility and coverage, attending to vulnerable under/uninsured patients, and negotiating new bureaucratic barriers for insured patients. Findings suggest that, like past efforts, this recent reform to the fragmented health care system has perpetuated a condition in which safety-net clinics and providers are left to buffer a widening gap for immigrant patients. With possible changes to the ACA ahead, safety-net providers' critical buffering roles will likely become more crucial, underscoring the necessity of examining their experiences with past reforms.

Effective Strategies for Affordable Care Act Enrollment in Immigrant-Serving Safety Net Clinics in New Mexico.

In the new Affordable Care Act (ACA) health care environment, safety-net institutions continue to serve as important sources of culturally appropriate care for different groups of immigrant patients. This article reports on a qualitative study examining the early ACA enrollment experiences of a range of health care providers (n = 29) in six immigrant-serving safety-net clinics in New Mexico. The six clinics configured their ACA enrollment strategies differently with regard to operations, staffing, and outreach. Providers reported a generally chaotic rollout overall and expressed frustration with strategies that did not accommodate patients, provided little training for providers, and engaged in minimal outreach. Conversely, providers lauded strategies that flexibly met patient needs, leveraged trust through strategic use of staff, and prioritized outreach. Findings underscore the importance of using and funding concerted strategies for future enrollment of immigrant patients, such as featuring community health workers and leveraging trust for outreach.

Stakeholders' Recommendations to Improve Patient-centered "LGBTQ" Primary Care in Rural and Multicultural Practices.

PURPOSE: Individuals among gender/sexual minorities share experiences of stigma and discrimination, yet have distinctive health care needs influenced by ethnic/racial minority and rural realities. METHODS: We collected qualitative data from lesbian/gay/bisexual/transgender (LGBT) and queer persons across the largely rural, multicultural state of New Mexico, particularly those from understudied ethnic groups, regarding factors facilitating or impeding patient-centered primary care. The themes identified formed the basis for a statewide summit on LGBT health care guidelines and strategies for decreasing treatment gaps. RESULTS: Three to 15 individuals, ages 18 to 75 years, volunteered for 1 of 4 town hall dialogues (n = 32), and 175 people took part in the summit. Participants acknowledged health care gaps pertinent to LGBT youth, elders, American Indians, and Latinos/Latinas, expressing specific concern for rural residents. CONCLUSIONS: This preliminary research emphasizes the need to improve primary care practices that treat rural and ethnic-minority LGBT people and offers patient-driven recommendations to enhance care delivery while clinic-level transformations are implemented.

Costs and inconsistencies in US IRB review of low-risk medical education research.

CONTEXT: Advances in communication technologies over the last two decades have transformed the way medical education research is conducted, creating opportunities for multi-institution national and international studies. Although these studies enable researchers to gain broader understandings of educational processes across institutions, they increase the need for multiple institutional review board (IRB) reviews to ensure the protection of human subjects. OBJECTIVES: This study describes the process of obtaining multiple IRB approvals of the same protocol for a multi-site, low-risk, medical education research project in the USA. The burden of obtaining those reviews and their consistency are assessed. The associated time and costs, and implications for the research process are detailed. METHODS: Following review by the investigators' parent institution IRB, the project team circulated a uniform protocol for conduct of a low-risk, medical education survey to the IRBs of 89 US medical schools for review. The processes and time required to obtain approvals were recorded to estimate associated research team personnel costs. RESULTS: Approval could not be obtained from five IRBs as a result of insurmountable procedural barriers. A total of 67 IRBs eventually deferred to the parent IRB determination. The remaining IRBs required a variety of additional procedural processes before ultimately agreeing with the original determination. The personnel costs associated with obtaining the 84 approvals amounted to US$121,344. CONCLUSIONS: Considering the value of multi-site designs to address a range of research questions, enhance participant diversity and develop representative findings, solutions must be found to counter inefficiencies of current IRB review processes for low-risk research, such as that usually conducted in medical education. Although we acknowledge that local review is an essential protective measure for research involving identifiable communities that are uniquely susceptible to social or economic harm, this report suggests that proposals to modernise and streamline IRB review processes for low-risk research are timely and relevant.

Racial, gender, and socioeconomic status bias in senior medical student clinical decision-making: a national survey.

BACKGROUND: Research suggests stereotyping by clinicians as one contributor to racial and gender-based health disparities. It is necessary to understand the origins of such biases before interventions can be developed to eliminate them. As a first step toward this understanding, we tested for the presence of bias in senior medical students. OBJECTIVE: The purpose of the study was to determine whether bias based on race, gender, or socioeconomic status influenced clinical decision-making among medical students. DESIGN: We surveyed seniors at 84 medical schools, who were required to choose between two clinically equivalent management options for a set of cardiac patient vignettes. We examined variations in student recommendations based on patient race, gender, and socioeconomic status. PARTICIPANTS: The study included senior medical students. MAIN MEASURES: We investigated the percentage of students selecting cardiac procedural options for vignette patients, analyzed by patient race, gender, and socioeconomic status. KEY RESULTS: Among 4,603 returned surveys, we found no evidence in the overall sample supporting racial or gender bias in student clinical decision-making. Students were slightly more likely to recommend cardiac procedural options for black (43.9 %) vs. white (42 %, p = .03) patients; there was no difference by patient gender. Patient socioeconomic status was the strongest predictor of student recommendations, with patients described as having the highest socioeconomic status most likely to receive procedural care recommendations (50.3 % vs. 43.2 % for those in the lowest socioeconomic status group, p < .001). Analysis by subgroup, however, showed significant regional geographic variation in the influence of patient race and gender on decision-making. Multilevel analysis showed that white female patients were least likely to receive procedural recommendations. CONCLUSIONS: In the sample as a whole, we found no evidence of racial or gender bias in student clinical decision-making. However, we did find evidence of bias with regard to the influence of patient socioeconomic status, geographic variations, and the influence of interactions between patient race and gender on student recommendations.

MyPreventiveCare: implementation and dissemination of an interactive preventive health record in three practice-based research networks serving disadvantaged patients--a randomized cluster trial.

BACKGROUND: Evidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services. Policy initiatives promote the adoption of information technologies to engage patients in care. We developed a theory-driven interactive preventive health record (IPHR) to engage patients in health promotion. The model defines five levels of functionality: (1) collecting patient information, (2) integrating with electronic health records (EHRs), (3) translating information into lay language, (4) providing individualized, guideline-based clinical recommendations, and (5) facilitating patient action. It is hypothesized that personal health records (PHRs) with these higher levels of functionality will inform and activate patients in ways that simpler PHRs cannot. However, realizing this vision requires both technological advances and effective implementation based upon clinician and practice engagement. METHODS/DESIGN: We are starting a two-phase, mixed-method trial to evaluate whether the IPHR is scalable across a large number of practices and how its uptake differs for minority and disadvantaged patients. In phase 1, 40 practices from three practice-based research networks will be randomized to add IPHR functionality to their PHR versus continue to use their existing PHR. Throughout the study, we will engage intervention practices to locally tailor IPHR content and learn how to integrate new functions into their practice workflow. In phase 2, the IPHR to all nonintervention practices to observe whether the IPHR can be implemented more broadly (Scalability). Phase 1 will feature an implementation assessment in intervention practices, based on the RE-AIM model, to measure Reach (creation of IPHR accounts by patients), Adoption (practice decision to use the IPHR), Implementation (consistency, fidelity, barriers, and facilitators of use), and Maintenance (sustained use). The incremental effect of the IPHR on receipt of cancer screening tests and shared decision-making compared to traditional PHRs will assess Effectiveness. In phase 2, we will assess similar outcomes as phase 1 except for effectiveness. DISCUSSION: This study will yield information about the effectiveness of new health information technologies designed to actively engage patients in their care as well as information about how to effectively implement and disseminate PHRs by engaging clinicians. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02138448.

Student specialty plans, clinical decision making, and health care reform.

BACKGROUND AND OBJECTIVES: Health care reform aims to increase evidence-based, cost-conscious, and patient-centered care. Family medicine is seen as central to these aims in part due to evidence of lower cost and comparable quality care compared with other specialties. We sought evidence that senior medical students planning family medicine residency differ from peers entering other fields in decision-making patterns relevant to these health care reform aims. METHODS: We conducted a national, anonymous, internet-based survey of senior medical students. Students chose one of two equivalent management options for a set of patient vignettes based on preventive care, medication selection, or initial chronic disease management scenarios, representing in turn evidence-based care, cost-conscious care, and patient-centered care. We examined differences in student recommendations, comparing those planning to enter family medicine with all others using bivariate and weighted, multilevel, multivariable analyses. RESULTS: Among 4,656 surveys received from seniors at 84 participating medical schools, students entering family medicine were significantly more likely to recommend patient management options that were more cost conscious and more patient centered. We did not find a significant difference between the student groups in recommendations for evidence-based care vignettes. CONCLUSIONS: This study provides preliminary evidence suggesting that students planning to enter family medicine may already have clinical decision-making patterns that support health care reform goals to a greater extent than their peers. If confirmed by additional studies, this could have implications for medical school admission and training processes.

Community participation in New Mexico's behavioral health care reform.

In 2005, New Mexico implemented a unique reform in managed behavioral health services that seeks to ensure delivery of consumer-driven, recovery-oriented care to low-income individuals. Distinguishing features of the reform are the Local Collaboratives (LCs), regionally based community organizations designed by state government to represent behavioral health concerns of New Mexico's diverse cultural populations. We examine community response to the LCs, focusing on two broad sets of themes derived from 18 months of ethnographic fieldwork. The first set--structure and function--encompasses several issues: predominance of provider versus consumer voice; insufficient resources to support internal operations; imposition of state administrative demands; and perceived lack of state response to LC efforts. The second set--participation and collaboration--reveals how problems of information flow and other logistical factors impact involvement in LCs and how the construction of "community" introduced under this initiative exacerbates tensions across localities with varied histories and populations.

Pragmatic help seeking: How sexual and gender minority groups access mental health care in a rural state.

OBJECTIVE: This qualitative study examined how lesbian, gay, bisexual, and transgender (LGBT) people in rural areas of the poor and multiethnic state of New Mexico access secular (professional and lay) and sacred (indigenous and Christian) mental health care resources. METHODS: In-depth, semistructured interviews were used to document the help-seeking processes of 38 rural LGBT people. RESULTS: Obtaining assistance was complicated by the ideal of self-reliance and the view of mental illness as a sign of weakness. Financial considerations and a lack of and community-based LGBT social networks also exerted substantial influence on help seeking. Many LGBT people would strategically remain silent about their sexuality or gender status and rely on their family ties to access the range of secular and sacred resources that are most commonly available in medically underserved rural communities. CONCLUSIONS: Although persons from sexual and gender minority groups often experience positive outcomes as a result of help seeking, some LGBT people remain vulnerable to anti-LGBT sentiments that persist within secular and sacred sectors of rural health care systems.