Centering marginalized voices in advocacy for equitable policy change in kidney disease.

PURPOSE OF REVIEW: Inequities in kidney disease are a result of differences in healthcare access and inequitable structural policies that lead to downstream social challenges. An individual with kidney disease sits at the intersection of a variety of governmental and institutional policies that directly affect their access to kidney healthcare and different care delivery models. However, their voice in policy change is often neglected by stakeholders with more structural power. Marginalized individuals with kidney disease are disproportionately affected by kidney disease and inequitable policies can further these health disparities. The review aims to describe how marginalized individuals can be centered in research and lead in advocacy efforts to promote equitable policy change. RECENT FINDINGS: The marginalized patient voice is critical in advocacy to promote equitable policy change. We discuss examples illustrating research and advocacy methods which center and partner with marginalized communities to catalyze effective policy interventions. SUMMARY: Centralizing the patient voice when engaging in advocacy can identify and contextualize the effects of inequitable public policy and improve advocacy efforts.

The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers.

Importance: Individuals of undocumented immigration status with kidney failure face barriers to receiving transplants due to lack of health insurance despite no regulatory barriers. Little is known about the perspectives on kidney transplant among individuals with undocumented immigration status with kidney failure who relied on emergency hemodialysis. Objective: To examine the overall experiences of transplant among transplant recipients of undocumented immigration status who previously relied on emergency hemodialysis and their family caregivers. Design, Setting, and Participants: In this qualitative study, semistructured 1-to-1 interviews were conducted with transplant recipients who had previously received emergency hemodialysis and transitioned to scheduled dialysis and their primary caregivers living in Denver, Colorado, between May 1, 2022, and March 31, 2023, in English or Spanish. Main Outcomes and Measures: Themes and subthemes regarding the experience of transplant as an undocumented immigrant previously receiving emergency hemodialysis were identified. Interview transcripts were translated, deidentified, and then analyzed using thematic analysis. Results: A total of 25 participants including 15 transplant recipients (5 [33.3%] female and 10 [66.7%] male; mean [SD] age, 49.5 [9.8] years) and 10 caregivers (7 [70.0%] female and 3 [30.0%] male; mean [SD] age, 44.5 [22.3] years) participated. Six themes were reported: limited kidney replacement therapy education while receiving emergency hemodialysis (lack of awareness of kidney disease and treatment options and discriminatory kidney replacement therapy education due to immigration status), hope for transplant once receiving scheduled dialysis (prospect of transplant through scheduled dialysis, family and quality of life as transplant motivators), transplant education and health insurance after transition to scheduled dialysis (inadequate transplant education in dialysis clinic, peer-to-peer transplant education, and peer-to-peer communication regarding availability of private health insurance), uncertainty during transplant evaluation (difficulty navigating the evaluation and wait-listing process, lack of communication regarding timeline, and concern for family limiting living donation), posttransplant improvements (ability to work after transplant is critically important given immigration status, autonomy with transplant improves mental health, and vigilance in maintaining transplant), and transplant facilitators (self-advocacy, spirituality and optimism, and peer support). Conclusions and Relevance: This qualitative study of transplant recipients of undocumented immigration status and their caregivers found that individuals formerly receiving emergency dialysis are excluded from education and access to transplant, and peer support throughout the transplant process helped with education and motivation to pursue transplant. These findings may be used to implement improvements in access to support and education for patients of undocumented immigration status with kidney failure, especially in areas where scheduled dialysis is not available.

Challenging Health Inequities in Incarceration: a Call for Equitable Care for Kidney Disease and Hypertension.

PURPOSE OF REVIEW: To review the current literature on care of hypertension and chronic kidney disease for people who are currently and formerly incarcerated, and to make recommendations for improving outcomes. RECENT FINDINGS: There is a growing body of literature describing care for kidney disease and hypertension for incarcerated and formerly incarcerated individuals that documents the provision of care itself, notably that many jails contract with private companies; the system is not designed to provide sustained, chronic disease care; and the transition from incarceration to community is fraught with gaps in care. However, deficiencies in data collection and regulation still limit our understanding of the quality of care provided in jails and prisons. Furthermore, more data is needed to understand the impact of structural racism in the criminal legal system on overall disparities in care for hypertension and kidney disease. Insurance coverage rates for people who were formerly incarcerated continue to be lower than the general population despite Medicaid expansion in many states. There is little recent data regarding kidney replacement therapy for this population despite known variation in dialysis modalities and transplant programs by state. Transitions clinics, which connect people who were formerly incarcerated with care in the community upon release, are growing and are important avenues by which to deliver care. People who are incarcerated are disproportionately affected by hypertension and kidney disease, yet data regarding the extent of these inequities and availability of quality care is lacking. More work is needed to understand the care of individuals with kidney disease and hypertension in prisons and to improve outcomes for these common chronic conditions. Both providing effective treatment of kidney disease and hypertension in prisons and jails and providing coordinated, quality transition to community care upon release represents an important opportunity for reform in care for a marginalized population.

A mixed methods study to evaluate the impact of a student-run clinic on undergraduate medical education.

BACKGROUND: The purpose of this study was to evaluate the extent to which a longitudinal student-run clinic (SRC) is meeting its stated learning objectives, including providing critical community services and developing physicians who more fully appreciate the social factors affecting their patients' health. METHODS: This was a mixed methods program evaluation of an SRC at Mayo Clinic Alix School of Medicine (MCASOM). A survey was conducted of medical students who had participated in the clinic and seven interviews and three focus groups were conducted with SRC patients, students, faculty, staff, and board members. Transcripts were coded for systematic themes and sub-themes. Major themes were reported. Survey and interview data were integrated by comparing findings and discussing areas of convergence or divergence in order to more fully understand program success and potential areas for improvement. RESULTS: Greater than 85% of student survey respondents (N = 90) agreed or strongly agreed that the SRC met each of its objectives: to provide a vital community service, to explore social determinants of health (SDH), to understand barriers to healthcare access and to practice patience-centered examination. Qualitative data revealed that the SRC contextualized authentic patient care experiences early in students' medical school careers, but the depth of learning was variable between students. Furthermore, exposure to SDH through the program did not necessarily translate to student understanding of the impact of these social factors on patient's health nor did it clearly influence students' future practice goals. CONCLUSIONS: The MCASOM SRC experience met core learning objectives, but opportunities to improve long-term impact on students were identified. Participation in the SRC enabled students to engage in patient care early in training that is representative of future practices. SRCs are an avenue by which students can gain exposure to real-world applications of SDH and barriers to healthcare access, but additional focus on faculty development and intentional reflection may be needed to translate this exposure to actionable student understanding of social factors that impact patient care.

Patient participation in medical student teaching: a survey of hospital patients.

BACKGROUND: Despite the common practice of involving in-patients in the teaching of medical students little is known about the experience for patients. This study investigated inpatients' willingness, motivations and experience with participation in medical student bedside teaching. METHODS: In-patients at a tertiary hospital who participated in medical student teaching answered a 22 question survey. The survey examined the motivations, impact and overall experience for these patients. RESULTS: During July and August of 2019, 111 patients aged 19-93 years completed the survey. Most patients who were approached by preceptors to participate in teaching agreed to participate (74%). Ninety-six percent of patients felt like they could have said no if they had not wanted to participate in medical student teaching. Ninety percent of patients valued the time they spent with students. CONCLUSIONS: Most hospital inpatients are willing to participate in medical student teaching in order to be helpful, and most have a positive experience. Preceptors in undergraduate medical education should prioritize a quality informed consent process and understand that the teaching experience can be mutually productive for patients and students.