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The perspective article explores systemic issues in psychiatric care, particularly the barriers to timely treatment and the ethical dilemmas involved in involuntary interventions. It further examines the impact of anosognosia—lack of disease insight—on treatment, noting the difficulties in managing care for those unaware of their illness, and scrutinizes training materials from international organizations that might mislabel necessary psychiatric practices as human rights violations, thereby complicating the care landscape. The discussion extends to the legal and societal implications of psychiatric interventions, using Massachusetts’ Rogers Guardianship as a case study to highlight the consequences of legalistic approaches to mental health treatment.
The article calls for destigmatizing psychiatric treatment and integrating robust, evidence-based practices to improve patient outcomes and healthcare equity. The global mental health policy landscape is urged to recognize the critical role of psychiatric care in restoring health and dignity to individuals with serious mental illnesses, advocating for a more nuanced understanding and application of human rights in mental health.
This chapter offers insights, stories, reflections, and practical examples of hope amid turbulent times. Given the constant need to reimagine our social-legal systems and teach new legal education strategies, we must codesign solutions with movement leaders and other advocates working to shift narratives and power structures in the legal system. As we seek to reimagine our world within the framework of health, equity, healing, human rights, and transformative justice, we must find new methods to develop students’ imaginations and build strategies to reimagine our social-legal systems in educational institutions. By codesigning solutions with movement leaders and other advocates, we can work to shift narratives and power structures in the legal system and beyond.
This chapter critically evaluates, from the standpoint of the capability approach and the human development paradigm, the reliance on market-driven forces and mechanisms in the vaccine development and distribution pillar of ACT-A (COVAX), and the significance of complementary (or supplementary) developments such as the establishment of mRNA technology transfer hubs and the waiver of certain provisions of the international intellectual property (IP) regime. In hope of regaining some ground lost in global health equity, this chapter highlights the need to appropriately situate IP rights, not by maintaining the status quo but to advance deeper relationality in terms of the technological capability of health systems, particularly those of the "Global South."
Mental health is deteriorating quickly and significantly globally post-COVID. Though there were already over 1 billion people living with mental disorders pre-pandemic, in the first year of COVID-19 alone, the prevalence of anxiety and depression soared by 25% worldwide. In light of the chronic shortages of mental health provider and resources, along with disruptions of available health services caused by the pandemic and COVID-related restrictions, technology is widely believed to hold the key to addressing rising mental health crises. However, hurdles such as fragmented and often suboptimal patient protection measures substantially undermine technology’s potential to address the global mental health crises effectively, reliably, and at scale. To shed light on these issues, this paper aims to discuss the post-pandemic challenges and opportunities the global community could leverage to improve society’s mental health en masse.
There has been an erosion of trust in medical care and clinical research, and this has raised issues about whether institutions and investigators conducting clinical research are worthy of trust. We review recent literature on research on trust and trustworthiness in the clinical research enterprise and identify opportunities to enhance trustworthiness, which will likely increase participant trust in clinical research. In addition, we review materials reporting the results of national polls related to the public’s trust in different occupations. The literature on trustworthiness and trust is complex and suffers from a lack of agreement on definitions of trust and trustworthiness and actions to enhance trustworthiness. Nonetheless, institutions need to take action to address the many elements that contribute to being perceived as trustworthy. As a complementary approach, since nurses have consistently ranked highest on trust by the public for twenty-two straight years, we analyze the features that likely account for the public’s uniform high regard for nurses. We propose specific actions to enhance the role of research nurses in the research enterprise, without compromising their primary role as participant advocates, that we have adopted at Rockefeller University to gain the benefits of the public’s trust in nurses in building trustworthiness.
Vaccination is the most important method to control the spread of SARS-CoV-2, the virus that causes COVID-19, and vaccination is key to this goal. This paper highlights considerations for policy development around vaccination attestation and proof requirements, specifically in rural Appalachia. Migrant and immigrant farmworkers are integral to the food and goods supply chain globally; they have been disproportionately impacted by COVID-19, therefore these policies need to take extensive precautions for farmworkers to systematically and easily comply with vaccination status submission procedures. In this paper, we present steps to equitably manage and implement vaccine mandates: (1) Develop and establish policies to support safe workplace standards for everyone, including vaccination policies; (2) Utilize equitable methods to collect vaccine verification; (3) Use effective and inclusive methods to implement the policies by using these techniques; (4) Integrate key populations to develop and strengthen policies to improve health equity.
There is a growing awareness that diversity, health equity, and inclusion play a significant role in improving patient outcomes and advancing knowledge. The Pediatric Heart Network launched an initiative to incorporate diversity, health equity, and inclusion into its 2021 Scholar Award Funding Opportunity Announcement. This manuscript describes the process of incorporating diversity, health equity, and inclusion into the Pediatric Heart Network Scholar Award and the lessons learned. Recommendations for future Pediatric Heart Network grant application cycles are made which could be replicated by other funding agencies.
Integrating community expertise into scientific teams and research endeavors can holistically address complex health challenges and grand societal problems. An in-depth understanding of the integration of team science and community engagement principles is needed. The purpose of this scoping review was to identify how and where team science and community engagement approaches are being used simultaneously in research.
Methods:
We followed Levac’s enhancement of Arksey and O’Malley’s Scoping Review Framework and systematically searched PubMed, CINAHL, Scopus, ERIC, and Embase for team science and community engagement terms through January 2024.
Results:
Sixty-seven articles were reviewed. Publications describing integrated team science and community-engaged research have increased exponentially since 2004. Over half were conducted outside of the U.S., utilized qualitative methods, included community-researcher co-development of research question and study design, and described team partnership goals, roles, and management. Fewer studies evaluated partnership, built community capacity, described financial compensation to communities, or described team dynamics facilitation.
Conclusion:
As researchers continue to integrate community engagement and team science, common criteria and strategies for integrating the approaches are needed. We provide 19 recommendations for research teams, research institutions, journals, and funding bodies in service of advancing the science and practice of this integration.
Translational research needs to show value through impact on measures that matter to the public, including health and societal benefits. To this end, the Translational Science Benefits Model (TSBM) identified four categories of impact: Clinical, Community, Economic, and Policy. However, TSBM offers limited guidance on how these areas of impact relate to equity. Central to the structure of our Center for American Indian and Alaska Native Diabetes Translation Research are seven regional, independent Satellite Centers dedicated to community-engaged research. Drawing on our collective experience, we provide empirical evidence about how TSBM applies to equity-focused research that centers community partnerships and recognizes Indigenous knowledge. For this special issue – “Advancing Understanding and Use of Impact Measures in Implementation Science” – our objective is to describe and critically evaluate gaps in the fit of TSBM as an evaluation approach with sensitivity to health equity issues. Accordingly, we suggest refinements to the original TSBM Logic model to add: 1) community representation as an indicator of providing community partners “a seat at the table” across the research life cycle to generate solutions (innovations) that influence equity and to prioritize what to evaluate, and 2) assessments of the representativeness of the measured outcomes and benefits.
Interstage monitoring programs for single ventricle disease have been developed to reduce morbidity and mortality. There is increased use of telemedicine and mobile application monitoring. It is unknown if there are disparities in use based on patient socio-demographic factors.
Methods:
We conducted a retrospective cohort study of patients enrolled in the single ventricle monitoring program and KidsHeart application at a single centre from 4/21/2021 to 12/31/2023. We investigated the association of socio-demographic factors with telemedicine usage, mobile application enrollment and usage. We assessed resource utilisation and weight changes by program era.
Results:
There were 94 children in the cohort. Patients with Norwood and ductal stent had higher mean telemedicine visits per month (1.8 visits, p = 0.004), without differences based on socio-demographic factors. There were differences in application enrollment with more Black patients enrolled compared to White patients (p = 0.016). There were less Hispanic patients enrolled than Non-Hispanic patients (p = 0.034). There were no Spaish speaking patient’s enrolled (p = 0.0015). There were no patients with maternal education of less than high school enrolled and all those with maternal education of advanced degree were enrolled (p = 0.0016). There was decreased mobile application use in those from neighbourhoods in the lowest income quartile. There were decreased emergency department visits with mobile application monitoring. Mean weight-for-age z-scores had increased from start to completion of the program in all eras.
Discussion:
Differences were seen in mobile application enrollment and usage based on socio-demographic factors. Further work is needed to ensure that all patients have access to mobile application usage.
The present study characterized heterogeneity in the cognitive profiles of monolingual and bilingual Latino older adults enrolled in the HABS-HD.
Methods:
A total of 859 cognitively unimpaired older adults completed neuropsychological testing. Raw scores for cognitive tests were converted to z-scores adjusted for age, education, sex, and language of testing. A latent profile analysis (LPA) was conducted for monolingual and bilingual speaker groups. A series of 2–5 class solutions were examined, and the optimal model was selected based on fit indices, posterior probabilities, proportion of sample sizes, and pattern of scores. Identified classes were compared on sociodemographic, psychosocial, and health characteristics.
Results:
For the monolingual group (n = 365), a 3-class solution was optimal; this consisted of a Low Average Memory group with low average verbal memory performances on the SEVLT Total Learning and Delayed Recall trials, as well as an Average Cognition group and a High Average Cognition group. For the bilingual group (n = 494), a 3-class solution was observed to be optimal; this consisted of a Low Average Memory group, with low average verbal memory performances on the learning and delayed recall trials of Logical Memory; a Low Average Executive group, where performance on Trails A and B and Digit Substitution were the lowest; and a High Average Cognition group, where performance was generally in the high average range across most cognitive measures.
Conclusions:
Cognitive class solutions differed across monolingual and bilingual groups and illustrate the need to better understand cognitive variability in linguistically diverse samples of Latino older adults.
Social determinants of health (SDoH), such as socioeconomics and neighborhoods, strongly influence health outcomes. However, the current state of standardized SDoH data in electronic health records (EHRs) is lacking, a significant barrier to research and care quality.
Methods:
We conducted a PubMed search using “SDOH” and “EHR” Medical Subject Headings terms, analyzing included articles across five domains: 1) SDoH screening and assessment approaches, 2) SDoH data collection and documentation, 3) Use of natural language processing (NLP) for extracting SDoH, 4) SDoH data and health outcomes, and 5) SDoH-driven interventions.
Results:
Of 685 articles identified, 324 underwent full review. Key findings include implementation of tailored screening instruments, census and claims data linkage for contextual SDoH profiles, NLP systems extracting SDoH from notes, associations between SDoH and healthcare utilization and chronic disease control, and integrated care management programs. However, variability across data sources, tools, and outcomes underscores the need for standardization.
Discussion:
Despite progress in identifying patient social needs, further development of standards, predictive models, and coordinated interventions is critical for SDoH-EHR integration. Additional database searches could strengthen this scoping review. Ultimately, widespread capture, analysis, and translation of multidimensional SDoH data into clinical care is essential for promoting health equity.
Seattle Children’s Research Institute is identifying the amount and type of health equity scholarship being conducted institution wide. However, methods for categorizing how scholarship is equity-focused are lacking. We developed and evaluated the reliability of a health equity scholarship coding schema applied to Seattle Children’s affiliated scholarship.
Methods:
A 2021–2022 Ovid MEDLINE affiliation search yielded 3551 affiliated scholarship records, with 1079 records identified via an existing filter as scholarship addressing social determinants of health. Through reliability testing and examining concordance and discordance across three independent coders of these records, we developed a coding schema to classify health equity scholarship (yes/no). When health equity scholarship proved positive/Yes, the coders assigned a one through five maturity rating of the scholarship towards addressing inequities. Subsequent reliability testing including a new coder was conducted for 992 subsequent affiliated scholarship records (Oct 2022–June 2023), with additional testing of the sensitivity and specificity of the existing filter relative to the new coding schema.
Results:
Reliability for identifying health equity scholarship was consistently high (Fleiss kappas ≥ .78) and categorization of health equity scholarship into maturity levels was moderate (Fleiss kappas ≥ .47). The coding schema identified additional health equity scholarship not captured in an existing filter for social determinants of health scholarship. Based on the new schema, 23.3% of Seattle Childrens’ affiliated scholarship published October 2002–June 2023 was health equity focused.
Conclusions:
This new coding schema can be used to identify and categorize health equity scholarship to help quantitate the health equity focus of portfolios of human-focused research.
People with psychosis experience worse cardiometabolic health than the same-aged general population. In New Zealand, Indigenous Māori experiencing psychosis have greater risk of cardiometabolic and other physical health problems.
Aims
To identify a cohort of adults accessing secondary mental health and addiction services in New Zealand, with a previous psychosis diagnosis as of 1 January 2018, and compare odds of hospital admission outcomes, mortality and receipt of cardiometabolic blood screening between Māori and non-Māori in the following 2 years.
Method
Crude and adjusted logistic regression models compared odds of hospital admission outcomes, mortality and receipt of cardiometabolic blood screening (lipids and haemoglobin A1c) between Māori and non-Māori, occurring between 1 January 2018 and 31 December 2019.
Results
A cohort (N = 21 214) of Māori (n = 7274) and non-Māori (n = 13 940) was identified. Māori had higher adjusted risk of mortality (odds ratio 1.26, 95% CI 1.03–1.54), and hospital admission with diabetes (odds ratio 1.64, 95% CI 1.43–1.87), cardiovascular disease (odds ratio 1.54, 95% CI 1.25–1.88) and any physical health condition (odds ratio 1.07, 95% CI 1.00–1.15) than non-Māori. Around a third of people did not receive recommended cardiometabolic blood screening, with no difference between Māori and non-Māori after covariate adjustment.
Conclusions
Māori experiencing psychosis are more likely to die and be admitted to hospital with cardiovascular disease or diabetes than non-Māori. Because of the higher cardiometabolic risk borne by Māori, it is suggested that cardiometabolic screening shortfalls will lead to worsening physical health inequities for Māori experiencing psychosis.
Educational opportunities for investigators and staff to promote inclusive research practices are a critical piece of the effort to increase diversity in study participation and promote health equity. However, few trainings to date have empirically been shown to result in behavior changes. We present preliminary evaluation findings for the Just Research workshop offered at the University of Wisconsin–Madison between October 2022 and August 2023. These sessions included 80 participants who made up 4 cohorts. Data was collected through a retrospective pre/post-test survey administered 0–7 days following the workshop (n = 70), and a follow-up survey administered 9–12 months following the workshop (n = 21). Participants demonstrate significant increases in knowledge and self-efficacy regarding implementing inclusive practices post-intervention (p < .001). 85.7% of participants who completed the follow-up survey reported implementing inclusive practices.
Multisector stakeholders, including, community-based organizations, health systems, researchers, policymakers, and commerce, increasingly seek to address health inequities that persist due to structural racism. They require accessible tools to visualize and quantify the prevalence of social drivers of health (SDOH) and correlate them with health to facilitate dialog and action. We developed and deployed a web-based data visualization platform to make health and SDOH data available to the community. We conducted interviews and focus groups among end users of the platform to establish needs and desired platform functionality. The platform displays curated SDOH and de-identified and aggregated local electronic health record data. The resulting Social, Environmental, and Equity Drivers (SEED) Health Atlas integrates SDOH data across multiple constructs, including socioeconomic status, environmental pollution, and built environment. Aggregated health prevalence data on multiple conditions can be visualized in interactive maps. Data can be visualized and downloaded without coding knowledge. Visualizations facilitate an understanding of community health priorities and local health inequities. SEED could facilitate future discussions on improving community health and health equity. SEED provides a promising tool that members of the community and researchers may use in their efforts to improve health equity.
The preventive services at the center of Braidwood Management, Inc. v. Becerra contribute to reducing inequities in life expectancy in the United States. Critical preventive are currently fully covered by insurance as preventive care under the Affordable Care Act. Reducing affordable access to such screenings and medicines is most likely to impact those with lower incomes and less education, and contribute to widening existing inequities in health outcomes.
Recent research has identified a large and growing mortality gap between those with and without college degrees. On average, individuals without college degrees are likely to die about 8.5 years earlier than those with such degrees. In recent decades, cancer death rates fell nearly two times faster among the college educated. Mortality from heart disease fell by nearly two-thirds among those with college degrees but by less than one-third for all others.
Disparities in life expectancy in the United States reflect the uneven progress against the leading causes of death among different populations. The Braidwood decision, if upheld, will raise the costs to patients for interventions that have contributed to recent gains in life expectancy. This Article analyzes the impact of Braidwood on preventive health interventions in the context of growing life expectancy gaps within the United States.
Braidwood Management, Inc. v. Becerra threatens the nationwide enforceability of the preventive care mandate of the Affordable Care Act (ACA) with respect to a variety of preventive health care services. The success of this lawsuit could have devastating repercussions. Not only would many current guidelines of the U.S. Preventive Services Task Force (USPSTF) be affected, but future preventive care recommendations would be as well, to the detriment of achieving health equity goals. This Article posits that the loss of guaranteed free preventive care could threaten current and future health equity gains. If preventive care is no longer offered without cost-sharing, research shows that many people, especially those with lower socioeconomic status, will not access the care. This decrease in access to recommended screenings and other preventive services would likely decrease uptake, over time impacting the stage at which diseases such as cancer are diagnosed, making late-stage diagnoses with poorer prognoses more common, and increasing transmission of other conditions such as HIV. At the population level, decreased access to free preventive care could hinder efforts to reduce entrenched inequalities associated with these conditions.
Moreover, these effects will be amplified as insured people lose access to preventive care recommendations that evolve in response to new research findings. In the years since the ACA’s passage, the USPSTF has brought a health equity lens to each step of its recommendation process, including how it chooses preventive services to study, how it designs and conducts its research plan, and its approach to issuing recommendations along with calls for more research. Although some have argued that the resulting shift in the USPSTF’s recommendations has not happened fast enough, the way in which the USPSTF structures its evidentiary reviews — with a focus on high-level literature reviews of medical studies — suggests that over time, as individual studies continue to examine the effectiveness of interventions in different populations and publish their results, the shift will become more dramatic and the resulting recommendations will be more effective at combating health care disparities. If Braidwood is successful, no-cost insurance coverage for these more responsive recommended services could be undermined.
This Article explores the potential impact Braidwood could have on existing and anticipated advances in preventive care through a focus on two life-threatening conditions: cancer and HIV. Both cancer and HIV preventive care recommendations have undergone significant changes since the implementation of the preventive care mandate. While the resulting recommendations remain imperfect, the Article shows the important and evolving relationship between these recommendations and efforts to overcome pervasive and entrenched disparities in health outcomes related to these conditions.If Braidwood is upheld, ongoing efforts to reduce disparities in cancer and HIV will be stymied.
Communicating research findings is a storytelling practice. The stories we tell as researchers are important to how the publics understand research findings and how research circulates in society. This is especially true for fields that have important social, political, or policy implications, such as the Developmental Origins of Health and Disease (DOHaD). In this chapter, we introduce the term ‘narrative choreographies’ to describe how researchers, clinicians, science journalists, and other actors embed DOHaD knowledge claims as part of larger scientific, social, and political narratives. Using examples from our own research, we show how DOHaD narratives can inadvertently pathologise and stigmatise marginalised people, such as low-income mothers and obese mothers. In order to combat this potentiality, we advocate for deliberately choreographing DOHaD narratives to address structural inequality and advocate for social justice and health equity. At the end of the chapter, we offer concrete recommendations for DOHaD researchers who are interested in reflecting on and workshopping their own narrative choreographies to better support the healthy development of parents, children, and communities.
Indigenous communities inherit a disproportionate burden of risks associated with climate change impacts, largely due to social and ecological determinants of health consistent with enduring architecture of settler-colonialism. Indigenous youth, then, must contend with histories of dispossession, loss, and historical trauma while also shouldering the reality of climate change that threatens their livelihoods and those of their communities. This chapter discusses the historical implications of colonialism on Indigenous youth mental health, while also considering the direct and indirect climate impacts on Indigenous youth wellness and mental health, particularly from a social and ecological determinants of health perspective. In addition, the authors advance that ethical principles and calls to action to privilege health equity promote the adaptive capacity of Indigenous youth and their communities. Finally, this chapter concludes with recognizing how Indigenous epistemologies and kinship systems can promote health and well-being of Indigenous youth, while also improving planetary health in the process.