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The Making Care Primary (MCP) model represents a sharp shift in Medicare’s approach to primary care, yet its current design risks duplicating failures from prior alternative payment models. Our editorial suggests refinements to address these gaps. To prevent early provider dropout from MCP’s rigid track-based system, we propose a sliding-scale infrastructure payment model that adjusts based on practice needs rather than abrupt phase-outs. Given MCP’s reliance on community-based organisations (CBOs) for social determinants of health interventions, we also advocate for direct, outcomes-based contracts between providers and CBOs, ensuring accountability for patient outcomes rather than passive referrals. We recommend that MCP enforce data-sharing mandates for commercial insurers and Medicaid agencies, drawing from Washington State’s successful Multi-Payer Collaborative, to avoid payer disengagement that plagued previous multi-payer models. To expand beyond conventional quality measures, we propose integrating patient-centred outcomes from the International Consortium for Health Outcomes Measurement, making sure MCP captures meaningful clinical impact. Finally, we propose programme adjustments frequently at two- to three-year intervals to refine risk adjustment methodologies. These approaches could enhance MCP’s sustainability, preventing the financial instability and misaligned incentives that undermined past value-based care initiatives.
Low-income, publicly insured youth face numerous barriers to adequate mental health care, which may be compounded for those with multiple marginalized identities. However, no research has examined how identity and diagnosis may interact to shape the treatment experiences of under-resourced youth with psychiatric conditions. Applying an intersectional lens to treatment disparities is essential for developing targeted interventions to promote equitable care.
Methods
Analyses included youth ages 7–18 with eating disorders (EDs; n = 3,311), mood/anxiety disorders (n = 3,219), or psychotic disorders (n = 3,035) enrolled in California Medicaid. Using state billing records, we examined sex- and race and ethnicity-based disparities in receipt of core services – outpatient therapy, outpatient medical care, and inpatient treatment – in the first year after diagnosis and potential differences across diagnostic groups.
Results
Many youth (50.7% across diagnoses) received no outpatient therapy, and youth with EDs were least likely to receive these services. Youth of color received fewer days of outpatient therapy than White youth, and Latinx youth received fewer therapy and medical services across outpatient and inpatient contexts. Sex- and race and ethnicity-based disparities were especially pronounced for youth with EDs, with particularly low levels of service receipt among boys and Latinx youth with EDs.
Conclusions
Results raise concerns for unmet treatment needs among publicly insured youth, which are exacerbated for youth with multiple marginalized identities and those who do not conform to historical stereotypes of affected individuals (e.g., low-income boys of color with EDs). Targeted efforts are needed to ensure equitable care.
Chapter 3 examines structural forces generating health disparities and ableist maldistributions of care in the United States, particularly for Black disabled people. It attends to Black disability justice activists’ demands for improved health policy, facilities access, and economic protections for care workers. In doing so, it elevates corrective research methods that stratification economics can embrace to better understand intersecting effects of race, disability, and gender on health outcomes. Chapter 3 considers proposals for a federal job guarantee and elevates ways that a federal health insurance program associated with it can meet the needs of Black disabled workers and their families.
Edited by
Richard Pinder, Imperial College of Science, Technology and Medicine, London,Christopher-James Harvey, Imperial College of Science, Technology and Medicine, London,Ellen Fallows, British Society of Lifestyle Medicine
Health inequalities refer to unfair and avoidable differences in health across populations, influenced by factors such as socio-economic status and societal inequality. These disparities are evident in various health and social outcomes, including child mortality, obesity, and life expectancy. Lifestyle Medicine, which focuses on individual behaviours, acknowledges the need for multi-level action to address health inequalities effectively. Strategies to improve health equity must consider individual circumstances, providing support according to specific needs. For instance, addressing food insecurity, promoting physical activity, and ensuring good quality sleep are Public Health targets that can benefit both individuals and society. Interventions must be tailored to overcome barriers such as cost, availability of resources, and safe environments for positive health behaviours. Ultimately, tackling lifestyle-related health inequality requires a collaborative effort between Lifestyle Medicine and Public Health, aiming for upstream changes to social determinants and advocating for a more equal society
Underrepresentation of diverse populations in medical research undermines generalizability, exacerbates health disparities, and erodes trust in research institutions. This study aimed to identify a suitable survey instrument to measure trust in medical research among Black and Latino communities in Baltimore, Maryland.
Methods:
Based on a literature review, a committee selected two validated instruments for community evaluation: Perceptions of Research Trustworthiness (PoRT) and Trust in Medical Researchers (TiMRs). Both were translated into Spanish through a standardized process. Thirty-four individuals participated in four focus groups (two in English, two in Spanish). Participants reviewed and provided feedback on the instruments’ relevance and clarity. Discussions were recorded, transcribed, and analyzed thematically.
Results:
Initial reactions to the instruments were mixed. While 68% found TiMR easier to complete, 74% preferred PoRT. Key discussion themes included the relevance of the instrument for measuring trust, clarity of the questions, and concerns about reinforcing negative perceptions of research. Participants felt that PoRT better aligned with the research goal of measuring community trust in research, though TiMR was seen as easier to understand. Despite PoRT’s lower reading level, some items were found to be more confusing than TiMR items.
Conclusion:
Community feedback highlighted the need to differentiate trust in medical research, researchers, and institutions. While PoRT and TiMR are acceptable instruments for measuring trust in medical research, refinement of both may be beneficial. Development and validation of instruments in multiple languages is needed to assess community trust in research and inform strategies to improve diverse participation in research.
Neurodevelopmental follow-up programmes for children with CHD help identify neurodevelopmental impairments and support the delivery of recommended interventions. The Cardiac Neurodevelopmental Outcome Collaborative, Diversity, Equity, and Inclusion Special Interest Group surveyed members to assess perceived patient barriers to neurodevelopmental follow-up, previous diversity and inclusion education, and confidence in caring for historically marginalised populations.
Methods:
A link to a Redcap online survey was emailed to Cardiac Neurodevelopmental Outcome Collaborative members on 23 April 2022, with 4 weeks given to complete.
Results:
Eighty-four participants from 37 institutions in North America completed the survey. Respondents acknowledged that education on the importance of neurodevelopmental follow-up and frequent accommodations for cancellations or rescheduling clinic visits is essential. Language interpretation and written materials were available in languages other than English, but a limited number provided fully translated evaluation reports. Driving distance and the caregiver’s lack of understanding of the rationale for neurodevelopmental follow-up were the top perceived barriers to programme attendance. At the institutional level, training for cultural competency was typically provided, and most respondents felt comfortable caring for patients from diverse backgrounds. However, many agreed their programmes could do more to make evaluations accessible to historically marginalised/underserved populations.
Conclusions:
Multiple barriers exist to cardiac neurodevelopmental follow-up, particularly for patients from under-represented minorities and for those whose primary language is not English. Surveying families will be valuable to understand how we may overcome these barriers. Further education about the importance of neurodevelopmental follow-up programmes continues to be essential.
The Weill Cornell Heart to Heart Community Outreach Campaign (H2H) is a free outreach program that provides mobile health screenings. The program brings medical and nursing faculty and students to the underserved, uninsured communities of New York City. Participants are screened for diabetes and heart disease risk factors through onsite exams, including point of care blood tests. If an abnormality is found, they receive a medical consultation to offer personalized advice and referrals to free/low-cost clinics when needed. The goal is to help underserved individuals understand their cardiometabolic health and to promote early intervention. This article describes the development of the program, including factors that were essential to the collaboration, challenges faced, barriers to implementation, and its evolution throughout the first 12 years. The program has benefited from strong foundational program leadership, effective inter-institutional collaboration, and maintaining community trust.
In recent years, there has been a growth in awareness of the importance of equity and community engagement in clinical and translational research. One key limitation of most training programs is that they focus on change at the individual level. While this is important, such an approach is not sufficient to address systemic inequities built into the norms of clinical and translational research. Therefore, it is necessary to provide training that addresses changing scientific norms and culture to ensure inclusivity and health equity in translational research.
Method:
We developed, implemented, and assessed a training course that addressed how research norms are based on histories and legacies of white supremacy, colonialism, and patriarchy, ultimately leading to unintentional exclusionary and biased practices in research. Additionally, the course provides resources for trainees to build skills in how to redress this issue and improve the quality and impact of clinical and translational research. In 2022 and 2023, the course was offered to cohorts of pre and postdoctoral scholars in clinical and translational research at a premier health research Institution.
Results:
The efficacy and immediate impact of three training modules, based on community engagement, racial diversity in clinical trials, and cancer clusters, were evaluated with data from both participant feedback and assessment from the authors. TL1 scholars indicated increased new knowledge in the field and described potential future actions to integrate community voices in their own research program.
Conclusions:
Results indicate that trainings offered new perspectives and knowledge to the scholars.
This article describes lessons learned from the incorporation of language justice as an antiracism praxis for an academic Center addressing cardiometabolic inequities. Drawing from a thematic analysis of notes and discussions from the Center’s community engagement core, we present lessons learned from three examples of language justice: inclusion of bilingual team members, community mini-grants, and centering community in community-academic meetings. Facilitating strategies included preparing and reviewing materials in advance for interpretation/translation, live simultaneous interpretation for bilingual spaces, and in-language documents. Barriers included: time commitment and expenses, slow organizational shifts to collectively practice language justice, and institutional-level administrative hurdles beyond the community engagement core’s influence. Strengthening language justice means integrating language justice institutionally and into all research processes; dedicating time and processes to learn about and practice language justice; equitably funding language justice within research budgets; equitably engaging bilingual, bicultural staff and language justice practitioners; and creating processes for language justice in written and oral research and collaborative activities. Language justice is not optional and necessitates buy-in, leadership, and support of community engagement cores, Center leadership, university administrators, and funders. We discuss implications for systems and policy change to advance language justice in research to promote health equity.
Despite one-third of patients with cancer using cannabis for symptom management, little is known about their access to and usage of cannabis. Community Engagement (CE) studios involving community experts with chronic health conditions were used to inform a qualitative study on access to and use of cannabis products among patients with cancer.
Method:
We conducted two 2-hour CE studios with residents from Western NY (WNY) (N = 18). Our sample primarily included White and Black residents (56% vs. 39%). After a researcher-led 10-minute presentation, a community facilitator led the discussion, which focused on questions about challenges to cannabis use, recommendations for providers when discussing cannabis with patients, and community factors influencing use.
Results:
Community experts reported that state legalization of cannabis made it easier to access cannabis, but the costs of cannabis and distance to dispensaries hindered their ability to obtain it. Discrimination was also a key barrier to medical cannabis receipt. There were differences in the perceived safety of where to obtain cannabis (dispensaries vs. friends). Community experts wanted providers to be more informed and less biased about recommending cannabis. Community experts recommended conducting focus groups for the subsequent study to ask questions about cannabis use.
Conclusion:
The CE studios encouraged us to switch formats from qualitative interviews to focus groups and provided guidance on question topics for the subsequent study. Incorporating community expert’s feedback through CE studios is an effective strategy to design more impactful studies.
Disparities in access to palliative care persist, particularly among underserved populations. We elicited recommendations for integrating community health workers (CHWs) into clinical care teams, by exploring perspectives on potential barriers and facilitators, ultimately aiming to facilitate equitable access to palliative care.
Materials and Methods:
Twenty-five stakeholders were recruited for semi-structured interviews through purposive snowball sampling at three enrollment sites in the USA. Interviews were conducted to understand perspectives on the implementation of a CHW palliative care intervention for African American patients with advanced cancer. After transcription, primary and secondary coding were conducted. Framework analysis was utilized to refine the data, clarify themes, and generate recommendations for integrating CHWs into palliative care teams.
Results:
Our sample comprised 25 key informants, including 6 palliative care providers, 6 oncologists, 5 cancer center leaders, 2 cancer care navigators, and 6 CHWs. Thematic analysis revealed five domains of recommendations: (1) increasing awareness and understanding of the CHW role, (2) improving communication and collaboration, (3) ensuring access to resources, (4) enhancing CHW training, and (5) ensuring leadership support for integration. Informants shared barriers, facilitators, and recommendations within each domain based on their experiences.
Conclusion:
Barriers to CHW integration within palliative care teams included limited awareness of the CHW role and inadequate training opportunities, alongside practical and logistical challenges. Conversely, promoting CHW engagement, providing adequate training, and ensuring support from leadership have the potential to aid integration.
Despite the recent momentum of mental health advocacy and resource allocation in several nations worldwide, the same progress is yet to be experienced in Haiti and other countries in the global south. In addition to the ongoing humanitarian crisis that continues to pre-dispose the people of Haiti to a variety of health conditions and mental illnesses, Haitian healthcare providers face further vulnerability to mental illness due to the high-stress nature of their work in a resource-limited environment. This study was conducted using a self-report questionnaire containing the Generalized Anxiety Disorder-7 and Patient Health Questionnaire-9 screening tools, distributed to Haitian healthcare providers nationwide. The results revealed that 84% of the 106 participants experienced mild to severe symptoms of depression, while 69% reported mild to severe symptoms of anxiety. This study also found that social determinants, including community violence, economic and social instability, and poverty, are among the most detrimental contributing factors to the mental health of Haitian healthcare providers. Despite the acute need for support, 76% of participants also reported having either no awareness or no access to mental health support. These findings serve as an urgent call for action to improve access to mental health resources for Haitian healthcare providers.
Academic-community research partnerships focusing on addressing the social determinants of health and reducing health disparities have grown substantially in the last three decades. Early-stage investigators (ESIs), however, are less likely to receive grant funding from organizations like the National Institutes of Health, and we know little about the facilitators and barriers they face on their career journeys or the best ways to support them and their community research partnerships. This study examines ESIs’ experiences with a program that funded and supported their community-partnered pilot health disparities research.
Methods:
Fourteen ESIs from five cohorts of pilot investigators participated in in-depth focus groups between April 2020 and February 2024. Two reviewers independently identified significant quotes and created codes. Thematic analysis was used to develop relevant themes.
Results:
The overarching theme was that the program was a launch pad for the ESIs’ research careers. Four distinct sub-themes contributing to the launch pad theme were: (1) ESI Growth & Adaptation; (2) Community and Support; (3) The Value of Collaboration and Partnership; (4) Need for Effective Mentorship. The results suggest the program offered ESIs and community partners substantial, unique support and resources, but challenges remained.
Conclusions:
Future programs helping ESIs who conduct community-engaged research to launch their research careers should consider implementing tailored support while offering strategies to eliminate or reduce institutional barriers, including strengthening mentoring.
Persistent discrimination and identity threats contribute to adverse health outcomes in minoritized groups, mediated by both structural racism and physiological stress responses.
Objective:
This study aims to evaluate the feasibility of recruiting African American volunteers for a pilot study of race-based stress, the acceptability of a mindfulness intervention designed to reduce racism-induced stress, and to evaluate preliminary associations between race-based stress and clinical, psychosocial, and biological measures.
Methods:
A convenience sample of African Americans aged 18–50 from New York City’s Tri-state area underwent assessments for racial discrimination using the Everyday Discrimination Scale (EDS) and Race-Based Traumatic Stress Symptom Scale. Mental health was evaluated using validated clinical scales measuring depression, anxiety, stress, resilience, mindfulness, resilience, sleep, interpersonal connection, and coping. Biomarkers were assessed through clinical laboratory tests, allostatic load assessment, and blood gene expression analysis.
Results:
Twenty participants (12 females, 8 males) completed assessments after consent. Elevated EDS scores were associated with adverse lipid profiles, including higher cholesterol/high-density lipoprotein (HDL) ratios and lower HDL levels, as well as elevated inflammatory markers (NF-kB activity) and reduced antiviral response (interferon response factor). Those with high EDS reported poorer sleep, increased substance use, and lower resilience. Mindfulness was positively associated with coping and resilience but inversely to sleep disturbance. 90% showed interest in a mindfulness intervention targeting racism-induced stress.
Conclusions:
This study demonstrated an association between discrimination and adverse health effects among African Americans. These findings lay the groundwork for further research to explore the efficacy of mindfulness and other interventions on populations experiencing discrimination.
Race/ethnicity and sleep disturbances are associated with dementia risk.
Aims
To explore racial–ethnic disparities in sleep disturbances, and whether race/ethnicity moderates the relationship between sleep disturbances and dementia risk among older adults.
Method
We analysed ten annual waves (2011–2020) of prospective cohort data from the National Health and Aging Trends Study, a nationally representative USA sample of 6284 non-Hispanic White (n = 4394), non-Hispanic Black (n = 1311), Hispanic (n = 342) and non-Hispanic Asian (n = 108) community-dwelling older adults. Sleep disturbances were converted into three longitudinal measures: (a) sleep-initiation difficulty (trouble falling asleep within 30 min), (b) sleep-maintenance difficulty (trouble falling asleep after waking up early) and (c) sleep medication usage (taking medication to sleep). Cox proportional hazards models analysed time to dementia, after applying sampling weights and adjusting for sociodemographic characteristics and health.
Results
Black, Hispanic and Asian respondents exhibited higher frequencies of sleep-initiation and sleep-maintenance difficulties, but had less sleep medication usage, compared with White older adults. Among Hispanic respondents, sleep-initiation difficulty was associated with significantly decreased dementia risk (adjusted hazard ratio (aHR) = 0.34, 95% CI 0.15–0.76), but sleep-maintenance difficulty was associated with increased dementia risk (aHR = 2.68, 95% CI 1.17–6.13), compared with White respondents. Asian respondents using sleep medications had a significantly higher dementia risk (aHR = 3.85, 95% CI 1.64–9.04). There were no significant interactions for Black respondents.
Conclusions
Sleep disturbances are more frequent among older Black, Hispanic and Asian adults, and should be considered when addressing dementia disparities. Research is needed to explore how certain sleep disturbances may elevate dementia risk across different racial and ethnic subgroups.
Payers have shaped the healthcare system in the United States as fee-for-service has facilitated a care model that prioritizes volume over the sake of patient care. This worsens health disparities, especially in safety net facilities where ancillary social work is both necessary clinically and completely uncompensated. Using concepts from Iris Marion Young’s Responsibility for Justice, it can be concluded that payers have a moral responsibility for reimbursing social care to address historical injustices. In this article, I describe the ethical hazards in paying for social care and propose a way to finance this through value-based payments.
People of low socioeconomic status (SES) are often underrepresented in biomedical research. The importance of demographically diverse research samples is widely recognized, especially given socioeconomic disparities in health, but have been challenging to achieve. One barrier to research participation by low SES individuals is their distance from research centers and the difficulty of traveling. This article examines the promise of portable magnetic resonance imaging (pMRI) for enrolling participants of diverse SES in structural neuroimaging studies, and anticipates some of the challenges, practical and ethical, that may arise in the course of such research.
An orientation to prevention is critical to abate the existing mental health crisis, with one in five US adults presently having a mental illness. The unmet need for mental health services is grounded in tenacious health, social, racial, and economic disparities, exacerbated by the pandemics of COVID-19 and racism. These realities present an unremitting threat to people’s lives, their physical welfare, and their psychological and social well-being. Despite a dearth of prevention training, psychologists and counselors may be best positioned to engage in prevention work. As professionals, we often feel powerless to prevent human suffering, and yet, we yearn, deep in our hearts, for a way to intervene earlier so as to prevent pain in our communities, intuitively aware that a way exists to make people’s lives easier and our work more impactful. This chapter introduces the approach of the book, which is to provide mental health professionals with the knowledge, resources, and tools to engage in “before-the-fact” intervention, to apply an ounce of prevention to the work we do, and to utilize a strength-based, culturally focused framework. In addition, this chapter provides a rationale and definition of prevention and an overview of the model prevention programs presented in this book.
This study investigated the influence of socioeconomic factors on the incidence of laryngomalacia in paediatric in-patients.
Methods
Data from the 2016 Healthcare Cost and Utilization Project Kid Inpatient Database were analysed. Variables included zip code median income, race and/or ethnicity, primary expected payer and associated International Statistical Classification of Diseases and Related Health Problems 10th Revision codes in admission.
Results
Lower median income zip codes showed a 6.4 per cent increase in laryngomalacia admissions, while higher-income zip codes had an 8.0 per cent decrease. Black patients exhibited a 24.5 per cent increase and Asian or Pacific Islander patients showed a 42.5 per cent decrease in laryngomalacia admissions. Medicaid and other government programme payers had a 22.1 per cent increase, while Medicare, private insurance and self-pay patients had decreases of 35.5, 20.9 and 55.7 per cent, respectively. Laryngomalacia was associated with a number of disease processes from a multitude of organ systems in a statistically significant manor.
Conclusion
Socioeconomic status, race, primary expected payer and co-morbid disease process significantly impact laryngomalacia admissions.
Social isolation has been implicated in the development of cognitive impairment, but research on this association remains limited among racial-ethnic minoritized populations. Our study examined the interplay between social isolation, race–ethnicity and dementia.
Methods
We analyzed 11 years (2011–2021) of National Health and Aging Trends Study (NHATS) data, a prospective nationally representative cohort of U.S. Medicare beneficiaries aged 65 years and older. Dementia status was determined using a validated NHATS algorithm. We constructed a longitudinal score using a validated social isolation variable for our sample of 6,155 community-dwelling respondents. Cox regression determined how the interaction between social isolation and race–ethnicity was associated with incident dementia risk.
Results
Average longitudinal frequency of social isolation was higher among older Black (27.6%), Hispanic (26.6%) and Asian (21.0%) respondents than non-Hispanic White (19.1%) adults during the 11-year period (t = −7.35, p < .001). While a higher frequency of social isolation was significantly associated with an increased (approximately 47%) dementia risk after adjusting for sociodemographic covariates (adjusted hazard ratio [aHR] = 1.47, 95% CI [1.15, 1.88], p < .01), this association was not significant after adjusting for health covariates (aHR = 1.21, 95% CI [0.96, 1.54], p = .11). Race–ethnicity was not a significant moderator in the association between social isolation and dementia.
Conclusions
Older adults from racial-ethnic minoritized populations experienced a higher longitudinal frequency of social isolation. However, race–ethnicity did not moderate the positive association observed between social isolation and dementia. Future research is needed to investigate the underlying mechanisms contributing to racial-ethnic disparities in social isolation and to develop targeted interventions to mitigate the associated dementia risk.