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Arturo González was a thirty-eight-year-old man who presented to our hospital during the Delta variant surge with COVID-related pneumonia that badly damaged his lungs. He was cannulated for extracorporeal membrane oxygenation (ECMO) upon admission; he had been on ECMO for seventy days and was awake and alert when Ethics was consulted. Due to multiple marginalized identities—he was an undocumented immigrant, uninsured, and had limited social support—Arturo did not have access to a lung transplant and was dependent on ECMO for survival. In the face of mounting critical care resource scarcity, Arturo’s intensivists disagreed about whether to continue ECMO indefinitely or to explore discussions about withdrawing support. In this book chapter, we discuss our role as ethics consultants balancing the organizational duty to justly steward scarce resources with the professional duty to this vulnerable patient: setting treatment boundaries while collaborating with Arturo on a treatment plan within these boundaries. We also discuss our role in addressing the care team’s moral distress at the most haunting aspect of this case: that Arturo’s social position limited his access to a lifesaving transplant.
This paper examines the prescription stimulant shortage in the United States, a crisis that has intensified since the FDA’s 2022 announcement of an Adderall shortage. The regulatory, systemic, and societal factors driving the shortage are analyzed — including the surge in attention-deficit/hyperactivity disorder (ADHD) diagnoses, expanded use of telehealth services, and disproportionate impact of the shortage on marginalized communities. It’s argued that existing health inequities are exacerbated by barriers to medication access as current regulatory frameworks are ill-equipped to address the growing demand for prescription stimulants, causing substantial harm to patients. A series of reforms are proposed — including modernizing the DEA’s quota system, strengthening interagency collaboration between the DEA, FDA, and HHS, and diversifying pharmaceutical supply chains to enhance resilience. These reforms aim to balance the dual imperatives of preventing misuse and ensuring equitable access to medications for patients with legitimate medical needs. By offering a comprehensive analysis of the prescription stimulant shortage and actionable policy recommendations, this paper seeks to inform regulatory reform, foster a more adaptive, patient-centered approach to ADHD care, and provide a roadmap for addressing one of the most pressing healthcare challenges of our time.
Trust in biomedical research is essential, multidimensional, and shaped by individual experiences, culture, and communication. Participants’ trust relies on researchers’ commitment to ethical practices. As public trust in science declines due to misinformation and disinformation campaigns, biomedical researchers (BmRs) must ensure trust and cultivate trustworthiness. This study explores BmR’s perspectives on trust and trustworthiness.
Methods:
We employed a qualitative, phenomenological approach to explore the experiences of BmRs. Through purposive sampling via the Indiana Clinical and Translational Sciences Institute, we invited BmRs to participate in semi-structured interviews. We employed rapid qualitative analysis (RQA) to identify key themes from interviews with BmRs. This action-oriented approach enables a research team to efficiently summarize experiences and perspectives, using structured templates and matrixes for systematic analysis and interpretation.
Results:
Fourteen BmRs were interviewed. Volunteer demographics were collected for race/ethnicity, gender, faculty rank, and investigator experience level. The following domains were identified: individual trust and trustworthiness, institutional trustworthiness, and trust and equity as a crucial part of structural and social drivers of health.
Conclusion:
We recognize that BmRs are dedicated to health equity and addressing disparities. However, in addition to committing to “best practices,” BmRs should prioritize actions that foster genuine trust from the communities they serve. More development opportunities are needed for reflection of what it means to be trusted by research volunteers and communities. Furthermore, intentions alone aren’t sufficient; earned trust and trustworthiness are vital.
Underrepresentation of people of color in clinical trials limits equity in research and treatment outcomes. This study evaluated the impact of a brief, community-focused educational intervention on perceptions and willingness to participate. Participants attended 30-minute sessions (9 virtual, 2 in-person). Identical pre- and post-surveys were analyzed using paired t-tests with Bonferroni correction. Eighty-three participants (90.5% Black, 88.4% female; mean age 46.3) showed significant improvements in comfort with participation, randomization, belief in protections, willingness to participate, and comfort in skin-related trials (all p < 0.05). Brief education may improve understanding and participation attitudes in underrepresented groups.
Community health centers (CHCs) and those most burdened by disease are important partners in setting research agendas to address the needs of people who are medically underserved.
Objectives:
Identify and prioritize health equity-focused research priorities using a collaborative approach to community engagement of key informants.
Methods:
We used five stepwise phases from January 2021 to February 2023 to formulate and prioritize a set of health equity-focused research topics among CHC staff (leaders, clinicians), their key advisors (patients and community members), and researchers from academic medical centers in California. Phases included: (1) community advisory board formation, (2) key informant identification, (3) individual/small group interview guide development and administration, (4) initial health equity-focused topic categorization, and (5) in-person meeting with community advisors for final topic prioritization using nominal group technique.
Results:
Twenty individual or small group interviews were completed with 44 diverse participants, along with engagement from our community advisory board, which resulted in an initial list of 11 health equity-focused research topics. Ninety advisors including diverse community members, CHC staff/leaders, and researchers prioritized six overarching research topics. Final prioritized health-equity focused research topics include addressing mental health challenges, improving public’s trust in healthcare and science, healthcare delivery models to increase access and utilization, build and sustain an anti-racist healthcare system, strategies and interventions to address health misinformation, and continuing and sustaining polices based on lessons learned from COVID-19.
Conclusions:
Results offer future direction for community-engaged research agendas to advance health equity among medically underserved and vulnerable patient populations.
By 2050, 1.31 billion people will be living with type 2 diabetes (T2DM). Those with social disadvantage experience greater diabetes prevalence, morbidity and mortality. Gestational diabetes (GDM) is an established factor for T2DM, with 3–4 times greater risks among women who are Black, Hispanic and South and South East Asians. Lifestyle interventions that include diet and physical activity reduce T2DM in at-risk populations, including women with prior GDM, regardless of ethnicity. However, migrant women from non-Western backgrounds are less likely to engage with the programme despite its efficacy. This review paper aims to describe the social disparities in GDM globally, with a focus on equity issues and interventions in Australia. It outlines a five-part approach to solutions that move us towards equity in reach and uptake for women from non-Western migrant backgrounds in Australia. Culturally inclusive solutions start with evaluating reach in underserved groups through equity audits or stratified analyses and identifying groups where reach is low. Community partnerships can then be formed with key actors across health and social sectors identified through stakeholder mapping. Effective reach strategies, including implementation and evaluation plans, will be co-developed through these partnerships, addressing risk factors, enablers and barriers to a healthy lifestyle. Solutions that integrate medical and social services, such as social prescribing, could facilitate healthy lifestyle choices through restructuring the social environment of the individual. These steps lead to interventions that promote social cohesion and resilience, enabling individuals to attain health and well-being in the face of external challenges.
To examine the impacts of school-based CalFresh Healthy Living (CFHL-California’s SNAP-Ed) interventions post-COVID-19-related school closures and whether student and school characteristics modified intervention impacts on student diet and physical activity (PA).
CFHL-eligible public schools (nintervention = 51; ncomparison = 18).
Participants:
4th/5th grade students (nintervention = 2115; ncomparison = 1102).
Results:
CFHL interventions were associated with an increase in consumption frequency of fruit (0·19 times/d (P = 0·015)) and vegetables (0·35 times/d (P = 0·006)). Differences in baseline diet and PA behaviours were observed by student race and gender and by whether the proportion of free and reduced-price meal (FRPM)-eligible students was above the state average. Notably, students in schools with FRPM above the state average reported more frequent consumption of sugar-sweetened beverages (Mean (se): 3·18 (0·10) v. 2·58 (0·11); P = 0·001) and fewer days/week with 60+ min of moderate-to-vigorous PA (MVPA) (Mean (se): 2·8 (0·10) v. 3·21 (0·12); P = 0·020) than those at schools with FRPM at/below the state average. Student gender, school urbanicity and school FRPM modified the relationship between the interventions and certain dietary and/or PA outcomes. Interventions were associated with greater increases in vegetable consumption in more urban schools (β (95 % CI) = 0·67 (0·15, 1·20)), and greater increases in fruit consumption (β (95 % CI) = 0·37 (0·07, 0·66)) and in MVPA in higher FRPM schools (β (95 % CI) = 0·86 (0·33, 1·39)).
Conclusions:
Findings reaffirmed effectiveness of school-based CFHL interventions. We identified existing student and school-level disparities and then observed that interventions were associated with greater increases in MVPA in the highest FRPM schools. Findings can inform an equity-centred approach to delivery of school-based interventions that facilitate equal opportunity for all children to achieve lifelong health.
There are critical gaps within implementation science concerning health equity, particularly for minoritised ethnic groups. Implementation framework adaptations are important to facilitate health equity, which is especially relevant for psychiatry due to ethnic inequities in mental health; however, the range of potential adaptations has yet to be synthesised.
Aims
This systematic scoping review aimed to identify and map the characteristics of adaptations to implementation frameworks for minority ethnic groups to improve health equity.
Method
Bibliographic searches of the MEDLINE, Embase, PsycINFO and CINAHL databases were conducted, spanning the period from 2004 to February 2024 for descriptions of implementation frameworks adapted for minority ethnic groups. The characteristics of those meeting the criteria were narratively synthesised.
Results
Of the 2947 papers screened, six met the eligibility criteria. Three different types of implementation frameworks were adapted across the six papers: evaluation, process and determinant frameworks. Most of the adaptations were made by expanding the original framework, and by integrating it with another model, theory or framework with an equity focus. The adaptations primarily focused on putting equity at the forefront of all stages of implementation from intervention selection to implementation sustainability. No studies measured the effectiveness of the adapted framework.
Conclusions
The findings demonstrate that implementation frameworks are modifiable, and different elements can be adapted according to the implementation framework type. This review provides a starting point for how researchers and healthcare providers can adapt existing implementation frameworks to promote health equity for minoritised groups across a range of healthcare settings.
This review article explores the legislative differences across Canadian jurisdictions with respect to involuntary admission and treatment pending appeal. Some jurisdictions restrict involuntary admission for mental illness to when there is a risk for serious bodily harm or physical impairment. However, the majority of jurisdictions recognize non-bodily harms or substantial mental or physical deterioration as grounds for involuntary admission when other criteria are met. Once a person is involuntarily admitted, jurisdictions differ on how treatment is authorized and whether treatment can commence while a person contests a finding of incapacity to treatment to the courts. Some jurisdictions permit treatment pending appeal while others do not. This article compares Canadian jurisdictions’ mental health legislation and addresses discrepancies through the lens of the Canadian Charter of Rights and Freedoms and the Canada Health Act.
Current evidence underscores a need to transform how we do clinical research, shifting from academic-driven priorities to co-led community partnership focused programs, accessible and relevant career pathway programs that expand opportunities for career development, and design of trainings and practices to develop cultural competence among research teams. Failures of equitable research translation contribute to health disparities. Drivers of this failed translation include lack of diversity in both researchers and participants, lack of alignment between research institutions and the communities they serve, and lack of attention to structural sources of inequity and drivers of mistrust for science and research. The Duke University Research Equity and Diversity Initiative (READI) is a program designed to better align clinical research programs with community health priorities through community engagement. Organized around three specific aims, READI-supported programs targeting increased workforce diversity, workforce training in community engagement and cultural competence, inclusive research engagement principles, and development of trustworthy partnerships.
Colonization and ongoing colonial policies and practices are contributing to increased dementia rates in Indigenous populations. This health inequity could be addressed by implementing culturally safe dementia interventions specifically designed for Indigenous people. We conducted a scoping review of culturally safe dementia care interventions for Indigenous populations. Databases searched included OVID (Medline, PsycINFO, Embase, Healthstar), Informit Indigenous Collection, JBI EBP, Scopus/Elsevier and PubMed. Eligibility criteria included studies in English, interventions designed specifically for Indigenous persons living with dementia and evaluative outcomes of the intervention. In total, 2,259 articles were identified. After removing duplicates, 1,394 titles and abstracts were screened and 54 studies were screened for eligibility. Of these, no studies were eligible for inclusion. This empty review reveals a massive and inexcusable gap in knowledge around developing, implementing and evaluating culturally safe Indigenous-specific dementia care interventions. Future directions for research include working with Indigenous peoples to determine what culturally safe interventions for dementia look like, implementing high-quality studies with evidence-based measures and outcomes, and improving efforts to get this important work published to inform future studies.
Actively engaging community health centers (CHCs) in research is necessary to ensure evidence-based practices are relevant to all communities and get us closer to closing the health equity gap. We report here on the Boston HealthNet Research Collaborative, a partnership between health centers, Boston HealthNet and the Boston University Clinical, and Translational Science Institute with the explicit goal of supporting research partnerships early in the planning phase of the study lifecycle. We used the principles of community engagement guided by a collective impact framework to codesign, pilot, and evaluate a process for facilitating research partnerships. Accomplishments in the first 2 years include a web-based Toolkit with a step-by-step guide and an active learning collaborative with health center representatives to support research capacity building. The process resulted in 81 new research project partnerships across 50 individual research projects. Most research partnership requests were made later in the research lifecycle, after the planning phase. Partnership acceptance was largely driven by the Collaborative’s pre-defined Guiding Principles and Rules of Engagement. These lessons drive an iterative process to improve the longitudinal relationship between our translational research program and our CHC partners.
Recognizing the increased demand for public health law skills within the public health workforce, ChangeLab Solutions, in collaboration with the Centers for Disease Control and Prevention, conducted a pilot program to increase knowledge of law among public health students. In partnership with a team of curriculum consultants, ChangeLab Solutions developed and piloted a curriculum across eight public health programs that consisted of six modules which focused on defining public health law and explaining its role in shaping health outcomes and inequities. Faculty members that piloted the modules found students had an increased knowledge of public health law concepts after completing the modules. Faculty members also experienced several barriers that might hinder effective delivery of the curriculum. Integration of public health law concepts into public health coursework within SPPH is one method of increasing students’ preparedness and capacity to use legal tools in addressing health outcomes and inequities.
Evidence-based concussion practices have been codified into legislation, yet implementation has been narrowly evaluated. We examined implementation of concussion practices in Massachusetts high schools and adopted a disproportionality lens to assess the relationship between school sociodemographic and policy implementation and examine whether differences in policy implementation represent systematic disparities consistent with the disproportionality literature.
Methods
A cross-sectional survey was sent to Massachusetts high school nurses (N=304). Responses (n=201; 68.1% response rate) were tallied so that higher scores indicated greater policy implementation. School demographic data were collected using publicly available datasets and were linked to survey responses. Descriptive statistics, correlations, k-means clustering, and groupwise comparisons were conducted.
Results
Policy implementation is varied across schools and is associated with school sociodemographic variables. As percentages of marginalized identities in student population increased, implementation rates decreased. K-means cluster analysis revealed two discrete groups based on policy implementation scores, with significant differences in sociodemographic variables between groups. Schools with low implementation scores had a greater percentage of students who identified as African American/Black and nurses with less experience.
Conclusions
Findings highlight current disparities in the implementation of concussion management policies and support adoption of a disproportionality lens in this sphere.
This chapter analyzes the ideological roots of social medicine in Latin America, its diffusion through institutional and interpersonal networks, and how they translated into social policy. It argues that Latin American social medicine was a movement with two distinct waves, bridged by a mid-century hiatus. First-wave social medicine – whose protagonists included figures such as Salvador Allende of Chile and Ramón Carrillo in Argentina – had its roots in the scientific hygiene movement, gained strength in the interwar period, and left its imprint on Latin American welfare states by the 1940s. Second-wave social medicine, marked by more explicitly Marxist analytical frameworks, took shape in the early 1970s amidst authoritarian pressures and crystallized institutionally in Latin American Social Medicine Association (ALAMES) (regionally) and Brazilian Association of Collective Health (in Brazil, ABRASCO). A dialectical process links these two waves into a single story: early social medicine demands, once institutionalized in welfare states and the international health-and-development apparatus, led to ineffective bureaucratic routines, which in turn sparked critical reflection, agitation for change, and a new wave of social medicine activism.
Health technology assessment (HTA) is a form of policy analysis that informs decisions about funding and scaling up health technologies to improve health outcomes. An equity-focused HTA recommendation explicitly addresses the impact of health technologies on individuals disadvantaged in society because of specific health needs or social conditions. However, more evidence is needed on the relationships between patient engagement processes and the development of equity-focused HTA recommendations.
Objectives
The objective of this study is to assess relationships between patient engagement processes and the development of equity-focused HTA recommendations.
Methods
We analyzed sixty HTA reports published between 2013 and 2021 from two Canadian organizations: Canada’s Drug Agency and Ontario Health.
Results
Quantitative analysis of the HTA reports showed that direct patient engagement (odds ratio (OR): 3.85; 95 percent confidence interval (CI): 2.40–6.20) and consensus in decision-making (OR: 2.27; 95 percent CI: 1.35–3.84) were more likely to be associated with the development of equity-focused HTA recommendations than indirect patient engagement (OR: .26; 95 percent CI: .16–.41) and voting (OR: .44; 95 percent CI: .26–.73).
Conclusion
The results can inform the development of patient engagement strategies in HTA. These findings have implications for practice, research, and policy. They provide valuable insights into HTA.
Morehouse School of Medicine (MSM) embodies an applied definition of community engagement advanced over four decades. The increased demand for community collaboration requires attention to the institutional contexts supporting community-engaged research. MSM partnered with the University of New Mexico Center for Participatory Research for the Engage for Equity (E2) PLUS Project to assess, ideate, and consider existing and recommended institutional supports for community-engaged research.
Methods:
MSM assembled a community-campus Champion Team. The team coordinated virtual workshops with 18 community and academic research partners, facilitated four interviews of executive leaders and two focus groups (researchers/research staff and patients/community members, respectively) moderated by UNM-CPR. Analyses of the transcripts were conducted using an inductive and deductive process. Once the themes were identified, the qualitative summaries were shared with the Champion Team to verify and discuss implications for action and institutional improvements.
Results:
Institutional strengths and opportunities for systemic change were aligned with equity indicators (power and control, decision-making, and influence) and contextual factors (history, trust, and relationship building) of The continuum of community engagement in research. Institutional advances include community-engagement added as the fourth pillar of the institution’s strategic plan. Action strategies include 1) development a research navigation system to address community-campus research partnership administrative challenges and 2) an academy to build the capacities of community/patient partners to independently acquire, manage, and sustain grants and negotiate equity in dissemination of research.
Conclusions:
MSM has leveraged E2 PLUS to identify systems improvements necessary to ensure that community/patient-centered research and partnerships are amplified and sustained.
Clinical trials have provided evidence for determining treatment effectiveness. However, clinical trial participants have been underrepresented by diverse and special population groups (e.g., younger and older adults, different races/ethnicities), contributing to disparities in our understanding of diseases and treatments in all those affected. Addressing these disparities in clinical trial participation would be critical to achieving health equity in the USA and beyond. To assess enrollment inclusivity in clinical research at a large academic medical center in the southeast, we used administrative information to develop a snapshot of clinical research participation by age, sex, race, ethnicity, and rurality that was accessible to the public. We compared research enrollment statistics with relevant geographic benchmarks (county, state, and national) from the 2020 US Census. Comparisons revealed 1) over-participation by females relative to county, state, and national benchmarks; 2) under-representation of Black/African Americans relative to county, but higher relative to state and national, levels; and 3) underrepresentation of Hispanic/Latino and Asian groups. The ISP Snapshot has promoted accountability and transparency in this institution’s efforts toward health equity. The process has highlighted the need to update and standardize use of outdated categories (e.g., binary gender, rural status) that limit accurate reporting.
During the COVID-19 pandemic, virtual physician visits rapidly increased among community-dwelling older persons living with dementia (PLWD) in Ontario. Rural residents often have less access to medical care compared to their urban counterparts, and it is unclear whether access to virtual care was equitable between PLWD in urban versus rural locations.
Methods:
Using population-based health administrative data and a repeated cross-sectional study design, we identified and described community-dwelling PLWD between March 2020 and August 2022 in Ontario, Canada. Poisson regression was used to calculate rate ratios (RR) and 95% confidence intervals comparing rates of virtual visits between rural and urban PLWD by key physician specialties: family physicians, neurologists and psychiatrists/geriatricians.
Results:
Of 122,751 PLWD in our cohort, 9.2% (n = 11,304) resided in rural areas. Rural PLWD were slightly younger compared to their urban counterparts (mean age = 81 vs. 82 years; standardized difference = 0.16). There were no differences across areas by sex or income quintile. In adjusted models, rates of virtual visits were significantly lower for rural compared to urban PLWD across all specialties: family physicians (RR = 0.71 [0.69–0.73]), neurologists (RR = 0.79 [0.75–0.83]) and psychiatrists/geriatricians (RR = 0.72 [0.68–0.76]).
Conclusions:
PLWD in rural areas had significantly lower rates of virtual family physician, neurologist and psychiatrist/geriatrician visits compared to urban dwellers during the study period. This finding raises important issues regarding access to primary and specialist healthcare services for rural PLWD. Future work should explore barriers to care to improve health care access among PLWD in rural communities.