Health Policy Commons^™

Perceived Sensitivity Of Sensor-Based Digital Health Data: Qualitative Interview Study, Christine Deeney, Anika Sonig, Meghan E Hurley, Birkan Tunç, Eric A Storch, John D Herrington, Jennifer Blumenthal-Barby, Kristin Kostick-Quenet

Center for Medical Ethics and Health Policy Staff Publications

Background: Digital health tools are increasingly used in mental health care to passively collect patient data and analyze health status outside of clinical settings. While technologies such as digital phenotyping, affective computing, and computational behavioral analysis offer new insights into symptom manifestation in daily life, they generate large volumes of potentially sensitive data that raise significant data privacy concerns, requiring high levels of patient awareness and consent. Empirical research is lacking on stakeholder understandings toward the sensitivity of these data and expectations for data stewardship, perspectives that are critical for developing robust informed consent and data protection policies for digital …

Elective Genomic Sequencing For Adults In Research, Clinical And Commercial Contexts, Michael D Linderman, Sophia M Adelson, Tala M Berro, Jennifer L Anderson, Scott D Crawford, Tshaka J Cunningham, Edward D Esplin, Altovise T Ewing-Crawford, Daiva E Nielsen, Stacey Pereira, Tara Schmidlen, Heather Andrighetti, Steven B Bleyl, George M Church, Eden V Haverfield, Madhuri Hegde, Lazaridis N Konstantinos, Paul Kruszka, Debra Leonard, Thomas May, Molly Mcginniss, Vaibhav Pandya, Eric E Schadt, Bastian Greshake Tzovaras, Bethany Zettler, Amy L Mcguire, Robert C Green

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Elective genomic sequencing (EGS) returns monogenic disease findings in multiple genes, including potentially novel variants, and may also provide participants with carrier status, pharmacogenomic and other health-related information. The PeopleSeq Study assessed participants' motivations for and concerns about EGS and the associated clinical and psychosocial outcomes across diverse EGS providers.

Methods: We administered a shared questionnaire to participants who chose to undergo EGS via 18 academic, clinical, or commercial EGS platforms.

Results: We enrolled 1575 participants, of whom 1147 (72.8%) completed a questionnaire after receiving their EGS results. A majority (60.3%) of the participants who completed a post-result questionnaire …

An Integrated Cardiometabolic Genetic Testing Program In A Predominantly Hispanic Population Within A Community Setting, Bo Yuan, Layla A Abushamat, Stacey Pereira, Surya Narayan Mulukutla, Grace E Tietz, Eric Venner, Sara E Kalla, Breanna Lee, Donna Muzny, Ginger Metcalf, Mullai Murugan, Sarah H Elsea, Senkottuvelan Kadirvel, Lele Li, Joshi Stephen, Shengfeng Xu, Victoria Yi, Monica Sulit, Christie L Kovar, Kimberly Walker, Marie-Claude Gingras, Jianhong Hu, Fei Yan, Taeko Gerber, Viktoriya Korchina, C Michael Fordis, Ruchi Gaba, Mahesh Changlani, Herschl Silberman, Hadley Stevens Smith, Christine M Eng, Jennifer E Posey, Clarisa Medina, Lisa R Treviño, Christie M Ballantyne, Richard A Gibbs, Ashok Balasubramanyam

Center for Medical Ethics and Health Policy Staff Publications

Purpose: This study aimed to apply cardiometabolic genetic testing in a community setting with a predominantly Hispanic population and assess feasibility and perspectives toward genetic testing.

Methods: A genome-sequencing-based genetic panel for cardiometabolic disorders (177 genes related to monogenic conditions, 2 LPA risk alleles, 2 pharmacogenomic loci, and ancestry-adjusted polygenic risk scores for type 2 diabetes and coronary artery disease) was deployed in community cardiology and endocrinology clinics in South Texas. A survey on perceptions toward genetic testing was administered after return of results.

Results: Testing was completed for 776 patients (18-92 years old, 92% Hispanic). 26 patients (3.4%) were …

Patient Perspectives On Psychiatric Polygenic Risk Scores In Reproductive Decision-Making And Polygenic Embryo Screening., Lauren A Ginn, Amanda R Merner, Page M Trotter, Kaitlynn P Craig, Abigail C Martinez, Ana Lucía Battaglino, Dorit Barlevy, Daphne M Ayton, Takahiro Soda, Eric A Storch, Gabriel Lázaro-Muñoz, Stacey Pereira

Center for Medical Ethics and Health Policy Staff Publications

Polygenic risk scores (PRS) estimate individuals' genetic risk for developing multifactorial conditions. Recent genome-wide association studies have enabled development of psychiatric PRS, which hold potential to streamline diagnosis and treatment of psychiatric conditions. As individuals with mental illness often identify concern about passing on psychiatric conditions as a key factor in family planning, some may also seek to use psychiatric PRS in reproductive decisions like childbearing or embryo selection for in vitro fertilization. Despite calls for increased regulation, there remains no clinical consensus on the utility of psychiatric PRS in reproductive contexts. Therefore, we conducted semi-structured interviews of adults with …

Breaking Bread And Barriers: Interprofessional Strategies To Improve Mental And Nutritional Health In Family Caregivers, Candy Ratliff

The Journal of the Research Association of Minority Professors

Family caregivers provide essential unpaid support to individuals with chronic illness, disability, dementia, and age-related decline; however, caregiving responsibilities often place caregivers at increased risk for psychological, physical, nutritional, and social challenges. This literature review examines the mental health and nutritional implications of family caregiving and explores barriers that contribute to declining caregiver wellness. Findings reveal elevated rates of depression, anxiety, emotional exhaustion, social isolation, food insecurity, sleep disturbances, financial strain, and chronic stress among caregivers. The literature further highlights the interconnected relationship between mental health, nutrition, and overall quality of life. Given the multidimensional nature of caregiver burden, interprofessional …

Explaining Variation In Medical Aid In Dying Policy Across U.S. States, Abigail Hopper

Undergraduate Theses, Capstones, and Recitals

This paper asks why Medical Aid in Dying (MAiD) policy in the United States does not follow a simple partisan pattern between states. Existing scholarship on morality policy emphasizes ideological conflict and partisan alignment, but this framework cannot fully explain why states with similar political compositions have adopted different MAiD policy outcomes, indicating that some key mechanisms shaping the variation have been overlooked. To address this, this paper combines a national dataset of MAiD policies across all fifty states with a comparative case study of Montana, Colorado, and West Virginia, focusing on differences in institutional venues, framing strategies, and coalition …

Determinants Of Corporal Punishment And Severe Physical Punishment In Egypt: A Mixed-Methods Analysis For Child Protection Policy, Marwa Moustafa Nassef

Theses and Dissertations

Corporal punishment (CP) and severe physical punishment (SPP) remain a major public health, child rights, and child protection policy concern. In Egypt, despite legislative reforms, survey-weighted analysis of the 2021 Egypt Family Health Survey (EFHS) 2021 (CAPMAS, 2022) reveals prevalence rates of 60.5% for CP and 27.4% for SPP among children aged 1–14 (author’s calculations using EFHS-2021, n=7623), yet evidence distinguishing the determinants of routine corporal punishment from escalation to severe physical punishment remains limited in low- and middle-income contexts. Guided by Bronfenbrenner’s ecological framework, this mixed-methods study identifies key drivers of CP and its escalation to SPP among Egyptian …

When School Culture Excludes: Deficit Discourse, Microaggressions, And The Mental Health Of Marginalized Students – A Conceptual Framework With Implications For School Psychology Practice And Equity Policy, Modupe Mercy Oyewunmi

Publications

Deficit-laden language like ‘behavior problem,’ ‘not college material,’ ‘won’t fit in’, ‘not a cultural fit’, operates as a systemic form of implicit bias and microaggression in school settings. Despite decades of research on school belonging and well-being, school psychology has yet to integrate these exclusionary discursive practices into a coherent health-determinant model that also accounts for the current anti-diversity, equity, and inclusion (DEI) policy environment. This conceptual paper proposes a testable framework linking deficit discourse and school-based microaggressions to student identity suppression, academic impostor phenomenon, and educator moral injury, with downstream effects on school mental health outcomes. We situate these …

Rethinking Ethics For An Era Of Trusted Computational Tools, Kristin M Kostick-Quenet, Meghan Hurley, John Herrington, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Computer perception (CP) technologies are poised to deliver near real-time behavioral insights with high precision. As technical barriers recede, our field's ethical focus must shift from "Can we trust the data?" to "Should we use it here, and how?" We propose a contextual ethics framework that: (1) defines the appropriate scope of CP integration; (2) advocates codesigned roadmaps to manage expectations and epistemic conflict; (3) expands evaluation beyond performance metrics to humanistic outcomes; and (4) anticipates future high performance systems to safeguard dignity, empathy, and shared decision-making in clinical care.

Public Attitudes Toward Cascade Genetic Screening In The United States, Hadley Stevens Smith, Emilie S Zoltick, Madison R Hickingbotham, Emily S Bonkowski, Stacey Pereira, Tara A Lavelle, David L Veenstra, Amy L Mcguire, Katherine E Bonini, Leila Jamal

Center for Medical Ethics and Health Policy Staff Publications

Introduction: After a patient receives genetic test results that indicate an actionable health condition, cascade genetic screening (CGS) is the process of evaluating the patient's relatives for a potentially elevated genetic risk of disease. The United States primarily relies on patients to communicate with their relatives, resulting in suboptimal rates of risk communication, familial genetic testing uptake, and risk-reducing interventions. There is ongoing debate about whether and how best to inform relatives of a potentially increased genetic risk.

Methods: We conducted a nationally representative survey of US adults to assess attitudes toward informing at-risk relatives, acceptability of system-mediated communication, and …

Accessibility And Daily Cigarette Consumption Among Indonesian Adolescents: A Descriptive Study, Noviana Lathifah, Istiqomah Hanifah Rachman, Anisa Isnaini, Gloria Threesia Piliphinsa Simatupang

Journal of Indonesian Health Policy and Administration

Despite restrictive regulations, Indonesia faces a high prevalence of adolescent smoking, facilitated by easy access to tobacco products. This descriptive study aims to describe cigarette accessibility patterns and daily consumption trends among Indonesian adolescents. A cross-sectional study was conducted using secondary data from the 2019 Global Youth Tobacco Survey (GYTS) involving 9,208 respondents. Descriptive analysis was performed to examine the distribution of age at smoking initiation, daily cigarette consumption, and purchasing accessibility. The majority of respondents started smoking at ≥14 years of age. Daily cigarette consumption showed an increasing trend with age, with older adolescents more likely to consume more …

Deadline-Chasing In Digital Health: Forecasting Emr Adoption Dynamics And Regulatory Impact In Indonesian Primary Care, Suryo Satrio, Bukhori Muhammad Aqid

Journal of Indonesian Health Policy and Administration

Indonesia is accelerating digital health adoption under Minister of Health Regulation No. 24/2022, which mandates the use and integration of Electronic Medical Records (EMRs) with SATUSEHAT. However, evidence on how quickly primary health care facilities (Fasilitas Kesehatan Tingkat Pertama – FKTP) are adopting EMRs and what the adoption curve looks like remains limited. Survey findings also suggest key barriers and enablers, including security and data migration concerns, as well as human resource and infrastructure constraints. This observational study used provider-network data from a single EMR vendor. Key measures included cumulative registered facilities, monthly registrations, same-month activation (total_active/monthly inflow) as …

Factors Associated With The Performance Of Essential Public Health Efforts At Primary Health Centers In Jember Regency, Griselda Ardelia Hibatullah, Nuryadi Nuryadi, Yennike Tri Herawati

Journal of Indonesian Health Policy and Administration

Performance assessment of primary health centers is essential to ensure the quality of healthcare services, including the delivery of essential public health efforts. The performance target for essential public health efforts in Jember Regency is set at ≥82%. This study aimed to analyze factors associated with the performance of essential public health efforts. The study employed an analytical cross-sectional design conducted from April to May 2025, with a sample of 37 out of 50 units selected through simple random sampling. Primary data were collected using questionnaires, while secondary data were obtained from primary health center (Pusat Kesehatan Masyarakat – …

Optimizing Vitamin A Intervention: Strengthening Supplementation With Targeted Biscuit Fortification, Mayfa Yemima Simanjuntak, Nadia Amanda, Yuli Berliana Simanjuntak, Carissa Wityadarda, Lesta Livolina Simamora

Journal of Indonesian Health Policy and Administration

Vitamin A deficiency (VAD) remains a persistent public health challenge in Indonesia, particularly among children under five and breastfeeding mothers. This study aimed to analyze the distribution of vitamin A interventions and assess the potential of biscuit fortification as a complementary strategy. This study employs a literature review using the Health Policy Triangle (HPT) framework, examining policy context, content, key actors, and implementation processes related to vitamin A interventions. The analysis was conducted using secondary data from government reports, international agencies, and peer-reviewed literature published between 2018 and 2025, with comparative evidence from Vietnam, Bangladesh, and Ghana. The findings show …

Referral Patterns From Primary Care To Referral Care By Icd-10 Codes In Indonesia: Cross-Sectional Analysis Of National Claims Data (2017–2024), Della Dwi Ayu, Syarif Rahman Hasibuan, Putu Erma Pradnyani, Nisrina Widyasanti

Journal of Indonesian Health Policy and Administration

Primary health care (PHC) facilities serve as gatekeepers within Indonesia’s tiered health system. However, PHC referral patterns to hospitals still show substantial variation and remain insufficiently characterized by disease groupings based on the International Classification of Diseases, 10th Revision (ICD-10). This study aimed to identify the most frequently referred diagnoses from PHC to secondary or tertiary care facilities and to determine the participant characteristics associated with referrals. This observational study employed a cross-sectional design using secondary data from the National Health Insurance (Jaminan Kesehatan Nasional – JKN) claims database for the period 2017–2024. The unit of analysis was each …

Determinants Of Musculoskeletal Disorder In Formal And Informal Workers In Indonesia, Herlina J. El-Matury, Nabila Syahlan, Mohd Rafee B. Baharuddin

Kesmas

Musculoskeletal disorders (MSDs) are a leading cause of disability globally and are strongly influenced by occupational conditions. Evidence comparing MSD risk between formal and informal workers remains limited, particularly in developing countries. This study examined the association between individual and job-related factors with MSD symptoms among formal and informal workers in Indonesia. A cross-sectional study was conducted among 1,089 workers in North Sumatra Province, Indonesia, from August 2024 to December 2025. Participants were recruited using stratified convenience sampling from both the formal (office and health workers) and informal (drivers, traders, and farmers) sectors. MSD symptoms were assessed using the Nordic …

The Feasibility Of Long-Term Care Within Indonesia’S National Health Insurance Scheme: A Qualitative Study, Atikah Adyas, Wan Aisyiah Baros, Khaterina Kristina Manurung, Dedy Revelino, Dewi Susanna, Vetty Yulianty, Anita Pebrina Lubis, Arum Atmawikarta, Iis Sinsin Nuryasini, Ahmad Jet Alamin

Kesmas

The rising prevalence of chronic diseases and disabilities, along with the aging of the population, has reduced individual independence and increased the demand for long-term care (LTC). This study aimed to assess the feasibility of integrating home healthcare services into Indonesia’s National Health Insurance (NHI) scheme. A qualitative study using purposive sampling was conducted in Bandar Lampung, Yogyakarta, and Jakarta, Indonesia, selected based on disease burden, proportion of older adults, and regional development. Data was collected through in-depth interviews, focus group discussions, and observation between August and September 2024, involving 68 informants, including regulators, community members, and health facility staff. …

Resilience And Social Support On Depression Risk For Chronic Obstructive Pulmonary Disease Patients In South Tangerang, Indonesia, Adhityawarman Menaldi, Sali Rahadi Asih, Farah Ainul Mardhiyyah

Kesmas

Chronic obstructive pulmonary disease (COPD) is a major public health concern with psychosocial impacts, such as reduced resilience and depression. This study examined the moderating role of perceived social support on the relationship between resilience and depression among individuals diagnosed with COPD in South Tangerang, Indonesia. A quantitative cross-sectional study was conducted between January and February 2024 using self-administered questionnaires. Participants were adult patients with clinically diagnosed COPD, recruited from all public health centers (PHC) in South Tangerang. A total of 125 participants met the inclusion criteria and were included in the analysis. Participants had a mean age of 41.46±15.69 …

Global Health Financing Of Diagonal Interventions: Building Resilient And Sustainable Health Systems In Sub-Saharan Africa, Lucy Kim

Master in Public Policy Theses

Background: Global health financing has historically prioritized disease-specific “vertical” programs over broader “horizontal” strengthening of general health systems. Vertical programs in HIV have led to unprecedented reductions in mortality worldwide, but HIV remains a significant public health threat in sub-Saharan Africa, where vertical strategies have long been criticized for creating fragmented health systems. In response, global health strategies have shifted towards combining vertical investments with broader horizontal activities, commonly referred to as “diagonal” programming. While evidence suggests that diagonal programming has the potential to create more resilient and sustainable health systems, evaluating its value for money is challenging due to …

Beyond The Ban: Chhaupadi Abolition And The Governance Of Menstrual Autonomy In Western Nepal, Nikita Paudel

Master in Public Policy Theses

This thesis examines how two decades of efforts to abolish chhaupadi have shaped the everyday conditions under which women and girls experience menstruation in western Nepal. Chhaupadi, commonly understood as menstrual seclusion, has been addressed through Supreme Court directives, national policy, criminal law, municipal implementation instruments, hut demolition campaigns, public health programming, and rights-based advocacy. Yet the practice has persisted, adapted, and in some cases moved into less visible spaces. Rather than treating this as a simple gap between law and practice, this thesis asks how abolition efforts themselves have become part of the regulatory regime through which menstruation is …

Menstruation Behind Bars: A Mixed-Methods Study On Menstrual Product Access And Distribution Practices In Mississippi County Jails, Eron Hendrix

Honors Theses

This study examines menstrual product access and distribution practices in Mississippi county jails. It highlights the impact of period poverty as a critical yet underexplored public health and human rights issue within the corrections system. While existing research documents widespread inequities in access to menstrual products women’s healthcare in the correctional system, limited attention has been given to menstrual health at the local jail level. Using a mixed-methods approach, this study combines qualitative interviews with jail correctional staff and quantitative survey data from formerly incarcerated women to better understand institutional practices and lived experiences.

Interviews were conducted with sheriffs, jail …

Characterizing Core Outcomes Of Responsible Stewardship For Human Genomic Data In The Cloud, Vasiliki Rahimzadeh, Bronwyn Walsh, Heidi L Rehm, Mildred Cho, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

We present findings from a scoping review of the genomic data sharing literature used to inform a core outcomes set for responsible data stewardship in the cloud. Genomic and related health data stemming from government funded research have undergone mass migration to the cloud where they can be more securely stored, accessed, and analyzed within shared computing environments. While this migration reflects a shift in privacy and security infrastructure for cloud-based repositories as oversight becomes more globalized, it also necessitates new data stewardship responsibilities to align authorized data access with ethical data use. Responsible data stewardship refers to the ethical …

Abortion Politics And Policy: Stigma And Access In The Silver State, Celene Fuller

Lincy Institute Events

In the aftermath of the Supreme Court’s Dobbs v. Jackson Women’s Health Organization (2022) overturning Roe V. Wade, states have taken divergent paths in regulating access to abortion services. In 2024, Nevada voters overwhelmingly passed Question 6 proposing to codify abortion rights into the state constitution. In November 2026, Question 6 will again be on the ballot for final confirmation. If it passes, these rights will be protected from future legislative action.

Despite Nevadans’ strong support for abortion rights, the state’s dearth of abortion providers limits access to these services. As this lecture explores, both providers and individuals seeking abortions, …

Mitigation Of Race-Based Antihypertensive Prescribing, Victoria Scaccia Msn Rn Cnl Dnp, Bridget O'Brien Dnp, Stephanie Crane Md, Amanda Bradke Md

North American Conference to End Race-Based Medicine

No abstract provided.

Six Steps To Squats: A Training Protocol To Guide Functional Rehabilitation Following Isolated Lower Extremity Fractures, Batoul Baydoun, Abdurrahman Ehsan, Manar Chebli, Zarrar Chauhdri, Ahmed Memon, Ahmad Almaat Bs, Omar Abdalla Bs, Haytham Alqasmi Bs, Ameen Suhrawardy Md, Rahul Vaidya Md

North American Conference to End Race-Based Medicine

No abstract provided.

Reconsidering The Use Of Race & Ethnicity In Clinical Decision-Making: The Path Towards Liberation Medicine, Donna Ahmadian Ms, Mph

North American Conference to End Race-Based Medicine

No abstract provided.

Sleeve Gastrectomy Vs. Glp-1 Agonists (Semaglutide): A Cost-Effectiveness Perspective On Long-Term Obesity Management, Naushad Khan, Luv Agarwal, Ritesh Sheth Md

North American Conference to End Race-Based Medicine

No abstract provided.

Contemplating Race In Clinical Algorithms: Educating The Physicians Of Tomorrow, Adam Gaetz

North American Conference to End Race-Based Medicine

No abstract provided.

Reimagining Black Maternal Health Narratives: Embracing A Vitality Framework For Joy, Liberation, And Healing, Ijeoma Nnodim Opara, Yasmine M. Elmi

North American Conference to End Race-Based Medicine

No abstract provided.

Voices From The Field: Provider Perspectives On The Implementation And Impact Of Race-Neutral Pfts, Kumbie Madondo Phd, Zoelene Hill Phd, Kimberly Murdaugh Md Ms, Natoushka Trenard Md

North American Conference to End Race-Based Medicine

No abstract provided.