Health Policy Commons^™

Withdrawal Management In Maine: Capacity Challenges And Opportunities For Improvement, Mary Lindsey Smith Phd, Katie Rosingana Ba, Tyler Egeland Ba, Sarah Mclaughlin Mph

Substance Use Research & Evaluation

This summary report presents findings from healthcare provider interviews conducted in 2024 to assess the current landscape of withdrawal management (WM) services in Maine. Sixteen providers, across eight counties and representing a range of substance use disorder (SUD) service types, were interviewed to evaluate capacity, challenges, and opportunities for improvement across the continuum of care. Thematic analysis identified widespread gaps in withdrawal management capacity, especially in ASAM Levels 1.7 to 4.0, with critical shortages in ambulatory and low-intensity residential services. Key barriers included geographic inequities, insufficient infrastructure, long waitlists, inadequate reimbursement, and workforce shortages exacerbated by stigma and provider discomfort. …

Feedback On Withdrawal Management Services In Maine From Persons With Lived Experience, Mary Lindsey Smith Phd, Katie Rosingana Ba

Substance Use Research & Evaluation

This summary report presents findings from interviews with twelve persons with lived experience of substance use disorder (PWLE). The interviews asked persons in recovery about their experiences accessing withdrawal management and broader substance use treatment services across Maine. Participants identified key barriers to treatment including high costs, limited bed availability, long wait times, geographic inaccessibility, and lack of centralized information. Gaps in service infrastructure, particularly for opioid withdrawal management, long-term treatment, and transition supports post-detox, were widely reported. Participants emphasized the critical need for more localized and individualized services, particularly for parents, rural residents, and low-income individuals. Recommendations include expanding …

Moving The Needle: The Policy Of Change On Syringe Access, New York City And State, 1988–2023, Joyce Rivera

Dissertations, Theses, and Capstone Projects

By the mid-1980s, the HIV/AIDS epidemic breached a longstanding consensus between the political class and its bureaucratic alliances that had relied for decades on attitudes and orientations that championed punitive prohibition toward drugs as a bedrock principle of policy making. This ‘focusing event’ created an opening for HIV/AIDS activists to build a movement that offered an alternative, a more effective and just approach to how government policies and practices can manage illegal drugs and the persons who use drugs.

The dissertation uses several theoretical and methodological tools to address the central research objective that highlights the critical role played by …

Path Dependency And The Politics Of U.S. Health Reform, Sophia Spadafore

Dissertations, Theses, and Capstone Projects

This study examines the impact of path dependency on health reform efforts in the United States, specifically analyzing how past policy decisions constrain subsequent reform possibilities. Utilizing the theoretical framework of historical institutionalism, the study investigates two significant cases—the passage of Medicare and Medicaid in 1965 and the The Patient Protection and Affordable Care Act (ACA) in 2010—to illustrate how successful healthcare reforms embed institutional arrangements that limit future policy innovation. Through a comparative case study approach grounded in legislative records, historical texts, and scholarly analyses, the research highlights that major healthcare reforms in the U.S. have consistently been structured …

Bridging The Gap: Exploring The Intersection Of Formal Mental Health Services And Informal Social Supports In Bipoc Communities, Patrice D. Patton-Campbell

Dissertations

Despite growing awareness of mental health disparities, BIPOC (Black, Indigenous, and People of Color) communities continue to face significant barriers in accessing culturally responsive mental health care. This dissertation explores the intersection between formal mental health services and informal social supports such as family, religious institutions, and community networks to understand which systems are more trusted, accessible, and effective for BIPOC individuals. Grounded in Urban Liberation Psychology and guided by decolonial and culturally responsive care frameworks, this qualitative study draws from focus groups and interviews with 33 participants, including both community members and service providers from the Chicagoland area and …

A Multi-Site Study Of Clinician Perspectives In The Lifecycle Of An Algorithmic Risk Prediction Tool, Rita Dexter, Kristin Kostick-Quenet, Jennifer Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

Recent advancements in the performative capacities of artificial intelligence (AI), machine learning (ML), and algorithmic-based tools open up numerous applications in modern medicine. There are, however, few studies that track the whole lifecycle of a digital healthcare tool as it evolves from conception, to design, and deployment in real world settings-especially with a focus on the social dynamics amongst the end-users of the tool: clinicians. In this paper, we present data from a multi-site, 5-year study focused on the development and deployment of an algorithmic risk calculator (HeartMate 3 Risk Score) into a validated and efficacy tested clinical decision support …

A Meta-Analysis Of Diagnostic Yield And Clinical Utility Of Genome And Exome Sequencing In Pediatric Rare And Undiagnosed Genetic Diseases, Rajshree Pandey, Noemi Fluetsch Brennan, Kalliopi Trachana, Sarah Katsandres, Olaf Bodamer, John Belmont, David L Veenstra, Siyang Peng

Center for Medical Ethics and Health Policy Staff Publications

Purpose: To systematically evaluate the diagnostic yield and clinical utility of genome sequencing (GS) and exome sequencing (ES; genome-wide sequencing [GWS]) in pediatric patients with rare and undiagnosed genetic diseases.

Methods: We conducted a meta-analysis of studies published between 2011 and 2023. To address study heterogeneity, comparative analyses included within-cohort studies using random-effects models.

Results: We identified 108 studies including 24,631 probands with diverse clinical indications. The pooled diagnostic yield among within-cohort studies (N = 13) for GWS was 34.2% (95% CI: 27.6-41.5; I2: 86%) vs 18.1% (95% CI: 13.1-24.6; I2: 89%) for non-GWS, with 2.4-times odds of diagnosis (95% …

International Society For Cell & Gene Therapy Expanded Access Working Group Position Paper: Key Considerations To Support Equitable And Ethical Expanded Access To Investigational Cell- And Gene-Based Interventions, Elena Maryamchik, Laertis Ikonomou, Beth E Roxland, Felix Grignon, Bruce L Levine, Bambi J Grilley

Center for Medical Ethics and Health Policy Staff Publications

This position paper reviews the Expanded Access pathway for cell and gene therapies, examining its critical role at the nexus of patient need, regulatory frameworks, and scientific advancement. Spearheaded by the International Society for Cell & Gene Therapy's Expanded Access Working Group, it explores how investigational therapies are accessed outside of clinical trials for patients with serious or life-threatening conditions when no approved alternatives exist. Access to cell and gene therapy products are of specific interest to patients because many times the products are bespoke, being used to treat serious and/or incurable conditions, and are potentially curative. As the field …

Detection Of Enterovirus Rna In Pancreas And Lymphoid Tissues Of Organ Donors With Type 1 Diabetes, Jutta E Laiho, Sami Oikarinen, Sofia Morfopoulou, Maarit Oikarinen, Ashlie Renner, Daniel Depledge, Matthew C Ross, Ivan C Gerling, Judith Breuer, Joseph F Petrosino, Vincent Plagnol, Alberto Pugliese, Antonio Toniolo, Richard E Lloyd, Heikki Hyöty, Npod-Virus Group

Center for Medical Ethics and Health Policy Staff Publications

Aims/hypothesis: The nPOD-Virus group collaboratively applied innovative technologies to detect and sequence viral RNA in pancreas and other tissues from organ donors with type 1 diabetes. These analyses involved the largest number of pancreas samples collected to date. The aim of the current work was to examine the presence of enterovirus RNA in pancreas and lymphoid tissues of organ donors with and without type 1 diabetes.

Methods: We analysed pancreas, spleen, pancreatic lymph nodes and duodenum samples from the following groups: (1) donors with type 1 diabetes (n=71) with (n=35) or without (n=36) insulin-containing islets; (2) donors with single or …

Genome-Wide Analyses Identify 30 Loci Associated With Obsessive-Compulsive Disorder, Nora I Strom, Zachary F Gerring, Marco Galimberti, Dongmei Yu, Matthew W Halvorsen, Abdel Abdellaoui, Cristina Rodriguez-Fontenla, Julia M Sealock, Tim Bigdeli, Jonathan R Coleman, Behrang Mahjani, Jackson G Thorp, Katharina Bey, Christie L Burton, Jurjen J Luykx, Gwyneth Zai, Silvia Alemany, Christine Andre, Kathleen D Askland, Julia Bäckman, Nerisa Banaj, Cristina Barlassina, Judith Becker Nissen, O Joseph Bienvenu, Donald Black, Michael H Bloch, Sigrid Børte, Rosa Bosch, Michael Breen, Brian P Brennan, Helena Brentani, Joseph D Buxbaum, Jonas Bybjerg-Grauholm, Enda M Byrne, Judit Cabana-Dominguez, Beatriz Camarena, Adrian Camarena, Carolina Cappi, Angel Carracedo, Miguel Casas, Maria Cristina Cavallini, Valentina Ciullo, Edwin H Cook, Jesse Crosby, Bernadette A Cullen, Elles J De Schipper, Richard Delorme, Srdjan Djurovic, Jason A Elias, Xavier Estivill, Martha J Falkenstein, Bengt T Fundin, Lauryn Garner, Christina Gironda, Fernando S Goes, Marco A Grados, Jakob Grove, Wei Guo, Jan Haavik, Kristen Hagen, Kelly Harrington, Alexandra Havdahl, Kira D Höffler, Ana G Hounie, Donald Hucks, Christina Hultman, Magdalena Janecka, Eric Jenike, Elinor K Karlsson, Kara Kelley, Julia Klawohn, Janice E Krasnow, Kristi Krebs, Christoph Lange, Nuria Lanzagorta, Daniel Levey, Kerstin Lindblad-Toh, Fabio Macciardi, Brion Maher, Brittany Mathes, Evonne Mcarthur, Nathaniel Mcgregor, Nicole C Mclaughlin, Sandra Meier, Euripedes C Miguel, Maureen Mulhern, Paul S Nestadt, Erika L Nurmi, Kevin S O'Connell, Lisa Osiecki, Olga Therese Ousdal, Teemu Palviainen, Nancy L Pedersen, Fabrizio Piras, Federica Piras, Sriramya Potluri, Raquel Rabionet, Alfredo Ramirez, Scott Rauch, Abraham Reichenberg, Mark A Riddle, Stephan Ripke, Maria C Rosário, Aline S Sampaio, Miriam A Schiele, Anne Heidi Skogholt, Laura G Sloofman, Jan Smit, María Soler Artigas, Laurent F Thomas, Eric Tifft, Homero Vallada, Nathanial Van Kirk, Jeremy Veenstra-Vanderweele, Nienke N Vulink, Christopher P Walker, Ying Wang, Jens R Wendland, Bendik S Winsvold, Yin Yao, Hang Zhou, Estonian Biobank, 23andme Inc, Arpana Agrawal, Pino Alonso, Götz Berberich, Kathleen K Bucholz, Cynthia M Bulik, Danielle Cath, Damiaan Denys, Valsamma Eapen, Howard Edenberg, Peter Falkai, Thomas V Fernandez, Abby J Fyer, J M Gaziano, Dan A Geller, Hans J Grabe, Benjamin D Greenberg, Gregory L Hanna, Ian B Hickie, David M Hougaard, Norbert Kathmann, James Kennedy, Dongbing Lai, Mikael Landén, Stéphanie Le Hellard, Marion Leboyer, Christine Lochner, James T Mccracken, Sarah E Medland, Preben B Mortensen, Benjamin M Neale, Humberto Nicolini, Merete Nordentoft, Michele Pato, Carlos Pato, David L Pauls, John Piacentini, Christopher Pittenger, Danielle Posthuma, Josep Antoni Ramos-Quiroga, Steven A Rasmussen, Margaret A Richter, David R Rosenberg, Stephan Ruhrmann, Jack F Samuels, Sven Sandin, Paul Sandor, Gianfranco Spalletta, Dan J Stein, S Evelyn Stewart, Eric A Storch, Barbara E Stranger, Maurizio Turiel, Thomas Werge, Ole A Andreassen, Anders D Børglum, Susanne Walitza, Kristian Hveem, Bjarne K Hansen, Christian Rück, Nicholas G Martin, Lili Milani, Ole Mors, Ted Reichborn-Kjennerud, Marta Ribasés, Gerd Kvale, David Mataix-Cols, Katharina Domschke, Edna Grünblatt, Michael Wagner, John-Anker Zwart, Gerome Breen, Gerald Nestadt, Jaakko Kaprio, Paul D Arnold, Dorothy E Grice, James A Knowles, Helga Ask, Karin J Verweij, Lea K Davis, Dirk J Smit, James J Crowley, Jeremiah M Scharf, Murray B Stein, Joel Gelernter, Carol A Mathews, Eske M Derks, Manuel Mattheisen

Center for Medical Ethics and Health Policy Staff Publications

Obsessive-compulsive disorder (OCD) affects ~1% of children and adults and is partly caused by genetic factors. We conducted a genome-wide association study (GWAS) meta-analysis combining 53,660 OCD cases and 2,044,417 controls and identified 30 independent genome-wide significant loci. Gene-based approaches identified 249 potential effector genes for OCD, with 25 of these classified as the most likely causal candidates, including WDR6, DALRD3 and CTNND1 and multiple genes in the major histocompatibility complex (MHC) region. We estimated that ~11,500 genetic variants explained 90% of OCD genetic heritability. OCD genetic risk was associated with excitatory neurons in the hippocampus and the cortex, along …

Joint Analysis Of The Npod-Virus Group Data: The Association Of Enterovirus With Type 1 Diabetes Is Supported By Multiple Markers Of Infection In Pancreas Tissue, Sarah J Richardson, Teresa Rodriguez-Calvo, Jutta E Laiho, John S Kaddis, Julius O Nyalwidhe, Irina Kusmartseva, Sofia Morfopoulou, Joseph F Petrosino, Vincent Plagnol, Kathrin Maedler, Margaret A Morris, Jerry L Nadler, Mark A Atkinson, Matthias Von Herrath, Richard E Lloyd, Heikki Hyoty, Noel G Morgan, Alberto Pugliese, Npod-Virus Group

Center for Medical Ethics and Health Policy Staff Publications

Aims/hypothesis: Previous pathology studies have associated enterovirus infections with type 1 diabetes by examining the enterovirus capsid protein 1 (VP1) in autopsy pancreases obtained near diabetes diagnosis. The Network for Pancreatic Organ Donors with Diabetes (nPOD) has since obtained pancreases from organ donors with type 1 diabetes (with broad age and disease duration) and donors with disease-associated autoantibodies (AAbs), the latter representing preclinical disease. Two accompanying manuscripts from the nPOD-Virus Group report primary data from a coordinated analysis of multiple enterovirus indices. We aimed to comprehensively assess the association of multiple enterovirus markers with type 1 diabetes.

Methods: The nPOD-Virus …

Job Satisfaction Among Health Workers At Primary Health Care In Palembang City, Indonesia, Asmaripa Ainy, Merri Nurmala Sarri, Poppy Fujiyanti, Hartati Inaku, Tannia Tembo

Kesmas

Health workers at primary health care are the frontline providers of community health services. This study aimed to investigate the level of job satisfaction of health workers at primary health care in Palembang City, South Sumatra Province, Indonesia, and its influencing factors. Using a questionnaire developed by the authors' team, the study involved 257 samples. A total of 66.15% of respondents indicated high satisfaction, 21.79% reported moderate satisfaction, and 12.06% expressed dissatisfaction. A statistically significant correlation was found between knowledge, skills, income, promotion opportunities, work supervision, and relationships with colleagues and job satisfaction (p-value <0.001). The correlations were strong, with Spearman's rho of 0.822, 0.869, 0.912, 0.895, and 0.821, respectively. Statistical analysis of the Wilcoxon rank-sum and Kruskal-Wallis tests showed no significant differences in median satisfaction scores between sociodemographic groups (p-value 0.072 to 0.552>0.05). These findings showed that job …

Factors Associated With Caregivers' Concern In Maintaining The Oral Function Of Elderly Living In Long-Term Care Facilities, Susiana Nugraha, Tri Budi Wahyuni Rahardjo, Misako Higashijima, Yuko Hirano

Kesmas

This study investigated the attentiveness of elderly caregivers in long-term care facilities in maintaining oral function. A cross-sectional approach was used to achieve the study's purpose. The sample size formula accounted for 213 caregivers randomly selected from 18 long-term care facilities in 4 provinces. A self-reported questionnaire of sociodemographic characteristics and an adapted Leopold’s oral care checklist was distributed. The average age of study participants was 35.24 (±11.2 SD; aged 18–70 years), dominated by females (62.9%), and only 39% had experienced long-term care training. Multiple linear regression analysis indicated that younger caregivers likely pay more attention in the swallowing periods …

Availability And Distribution Of Stoma Bags For Colorectal Cancer Patients: A Case Study At National Referral And Private Hospitals, Ratna Aryani, Toar Jm Lalisang, Debie Dahlia, Evi Martha, Achir Yani S Hamid, Sukma Wicaturatmashudi, Helen Helen

Kesmas

Stoma bags are essential for colorectal cancer (CRC) patients with stomas. However, access and affordability in Indonesia remain challenging as the National Health Insurance (NHI) does not fully cover these devices. This study aimed to describe the availability and distribution of stoma bags for patients with CRC in national referral and private hospitals, focusing on outpatient access. A qualitative case study was conducted through observations and in-depth interviews with four enterostomal therapy nurses and six patients across three national referral hospitals and one private hospital in the Jakarta Metropolitan Area, Indonesia. Notably, the availability of stoma bags was limited in …

Sed Waiver Seclusion And Restraint Data, Genevieve Graaf, Alex Fejer, Monica Canizares

Social Work Datasets-Archive

This dataset includes a set of policy indicators about what states do and do not allow, and what types of oversight and safeguards they provide, around the use of seclusion, restraint and other restrictive interventions in 1915(c) Medicaid home and community based services waiver programs for children with significant mental health needs. Includes data for all states operating these programs from 2008 to 2024.

Matthew Kinnard, Matthew A. Kinnard M.S., Ph.D.

We Are NIH Oral History Project

No abstract provided.

Science Tikkun: A Bioscience Pandemic Framework In A Hebrew Tradition Of Global Repair, Peter Hotez

Center for Medical Ethics and Health Policy Staff Publications

Over the past decade we have seen a steady increase in dangerous pandemic threats. They include two major Ebola epidemics and cholera in Africa; dengue, Zika, yellow fever in the Americas; a COVID-19 pandemic; and H5N1 in Texas. This is happening because of a confluence of modern forces including urbanization, deforestation, and climate change. Yet as pandemics emerge on a crowded and warming planet, anti-science disinformation and antisemitism impede our response. Science tikkun is an overarching framework for repair and redress. It honors the legacy of Maimonides, Teilhard de Chardin, and others who have sought reconciliation between science and religion.

Framing The Future: A Community Health Analysis Of The Pee Dee Region, Stephen Borders, Jean Anton, Rian Fontaine, Donielle Phillips, Treyton Ringer, Jessica Robinson, Caitlin Thompkins

Public Health

This report presents a comprehensive, data-driven analysis of community health across South Carolina’s Pee Dee region, encompassing Florence, Darlington, Chesterfield, Marlboro, Marion, and Dillon Counties. Using tract-level data from CDC PLACES, the U.S. Census, and the National Provider Identifier registry, it assesses chronic health conditions, health behaviors, and social determinants of health. The analysis incorporates the South Carolina Healthy Communities Index (SCHCI) and a Suitability Analysis to identify the region’s most disadvantaged communities. The findings highlight persistent disparities, particularly in rural counties, where high rates of poverty, chronic disease, and unmet basic needs intersect with limited access to care. Despite …

Federal Health Research Cuts In The Mountain West, 2025, Mia Tschan, Ivan Sun, Sydney Mitchell, Caitlin J. Saladino, William E. Brown Jr.

Health

This fact sheet presents data from the Science & Community Impacts Mapping Project (SCIMaP) report, “Impact of Federal Health Research Cuts,” which predicts economic and job losses resulting from proposed National Institutes of Health (NIH) funding/grants cuts for indirect research costs as of April 9, 2025. This fact sheet focuses on predicted economic and job loss for the Mountain West states of Arizona, Colorado, Nevada, New Mexico, and Utah, and county-level data for the State of Nevada.

Should Physicians Take The Rap? Normative Analysis Of Clinician Perspectives On Responsible Use Of 'Black Box' Ai Tools, Ben H Lang, Kristin Kostick-Quenet, Jared N Smith, Meghan Hurley, Rita Dexter, Jennifer Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

Background: Increasing interest in deploying artificial intelligence tools in clinical contexts has raised several ethical questions of both normative and empirical interest. One such question in the literature is whether "responsibility gaps" (r-gaps) are created when clinicians utilize or rely on such tools for providing care, and if so, what to do about them. These gaps are particularly likely to arise when using opaque, "black box" AI tools. Compared to normative and legal analysis of AI-generated responsibility gaps in health care, little is known, empirically, about health care providers views on this issue. The present study examines clinician perspectives on …