Health Policy Commons^™

Which Way? Experiences Of Aboriginal And Torres Strait Islander People Who Are Deaf Or Hard Of Hearing Attaining Supports To Meet Their Interwoven Socio-Cultural, Health And Disability-Related Needs And Aspirations Within The Context Of Australia’S National Disability Insurance Scheme, Jody Barney, Alexandra Devine, Damien Howard, Marie Huska, Hannah Lack, Yeokyung Kim, Yi Yang, George Disney, Peter Summers, Ashley Mcallister

Journal of the Australian Indigenous HealthInfoNet

The life experiences of Aboriginal and Torres Strait Islander people who are Deaf or Hard of Hearing are often more complex than for Aboriginal and Torres Strait Islander people who are hearing, or non-Aboriginal Australians who are Deaf or Hard of Hearing. In turn, this can make engaging with and benefiting from policies and programs such as Australia’s National Disability Insurance Scheme (NDIS) more complex, particularly for individuals living in remote settings. To understand more about these complexities, yarnings were held with 15 Aboriginal and Torres Strait Islander NDIS participants who are Deaf or Hard of Hearing living in rural …

Association Of Deployment Characteristics And Exposures With Persistent Ill Health Among 1990–1991 Gulf War Veterans In The Va Million Veteran Program, Lea Steele, Rachel Quaden, Sarah T Ahmed, Kelly M Harrington, Linh M Duong, John Ko, Elizabeth J Gifford, Renato Polimanti, J Michael Gaziano, Mihaela Aslan, Drew A Helmer, Elizabeth R Hauser, Department Of Veterans Affairs Cooperative Studies Program #2006 And The Va Million Veteran Program

Center for Medical Ethics and Health Policy Staff Publications

Background: Veterans of the 1990-1991 Gulf War have experienced excess health problems, most prominently the multisymptom condition Gulf War illness (GWI). The Department of Veterans Affairs (VA) Cooperative Studies Program #2006 "Genomics of Gulf War Illness in Veterans" project was established to address important questions concerning pathobiological and genetic aspects of GWI. The current study evaluated patterns of chronic ill health/GWI in the VA Million Veteran Program (MVP) Gulf War veteran cohort in relation to wartime exposures and key features of deployment, 27-30 years after Gulf War service.

Methods: MVP participants who served in the 1990-1991 Gulf War completed the …

Short-Term Neurologic Outcomes In Pediatric Extracorporeal Membrane Oxygenation Are Proportional To Bleeding Severity Graded By A Novel Bleeding Scale, Katherine Doane, Danielle Guffey, Laura L Loftis, Trung C Nguyen, Matthew A Musick, Amanda Ruth, Ryan D Coleman, Jun Teruya, Christine Allen, Melania M Bembea, Brian Boville, Jamie Furlong-Dillard, Santosh Kaipa, Mara Leimanis, Matthew P Malone, Lindsey K Rasmussen, Ahmed Said, Marie E Steiner, Deanna T Tzanetos, Heather Viamonte, Linda Wallenkamp, Arun Saini

Center for Medical Ethics and Health Policy Staff Publications

Introduction: This study aimed to characterize the severity of bleeding and its association with short-term neurologic outcomes in pediatric ECMO.

Methods: Multicenter retrospective cohort study of pediatric ECMO patients at 10 centers utilizing the Pediatric ECMO Outcomes Registry (PEDECOR) database from December 2013-February 2019. Subjects excluded were post-cardiac surgery patients and those with neonatal pathologies. A novel ECMO bleeding scale was utilized to categorize daily bleeding events. Poor short-term neurologic outcome was defined as an unfavorable Pediatric Cerebral Performance Category (PCPC) or Pediatric Overall Performance Category (POPC) (score of >3) at hospital discharge.

Results: This study included 283 pediatric ECMO …

Does Hospital–Physician Integration Improve Hospital Performance? Results From A Usa Longitudinal Study, Soumya Upadhyay, Randyl A. Cochran, William Opoku-Agyeman

Healthcare Administration and Policy Faculty Research

In a dynamic healthcare industry, aligning the goals and objectives of hospitals and physicians through integration has been suggested to influence performance. Physicians’ leadership and active involvement in governance can direct resource usage, Electronic Health Record (EHR) implementation, price negotiation, better coordination, and continuity of services for patients, thus affecting performance. This study aimed to examine the relationship between physician integration and hospital performance, investigating both financial and quality outcomes. We used a longitudinal study design. Our sample was hospital-level data from 2014 to 2019, which contained 6000 U.S. hospital-year observations. The dependent variables were quality outcomes (readmission rates) and …

Dental Compacts, Bill Sullivan Jd

West Michigan District Dental Society Bulletin

This Advocacy Avenue article covers all things dental compacts, including current policy. It is adapted from an interview with Bill Sullivan, MDA Vice President of Advocacy and Professional Affairs.

How Do Parents Decide On Genetic Testing In Pediatrics? A Systematic Review, Hadley Stevens Smith, Bethany Zettler, Casie A Genetti, Madison R Hickingbotham, Tanner F Coleman, Matthew Lebo, Anna Nagy, Hana Zouk, Lisa Mahanta, Kurt D Christensen, Stacey Pereira, Nidhi D Shah, Nina B Gold, Sheyenne Walmsley, Sarita Edwards, Ramin Homayouni, Graham P Krasan, Hakon Hakonarson, Carol R Horowitz, Bruce D Gelb, Bruce R Korf, Amy L Mcguire, Ingrid A Holm, Robert C Green

Center for Medical Ethics and Health Policy Staff Publications

Efforts to implement and evaluate genome sequencing (GS) as a screening tool for newborns and infants are expanding worldwide. The first iteration of the BabySeq Project (2015-2019), a randomized controlled trial of newborn sequencing, produced novel evidence on medical, behavioral, and economic outcomes. The second iteration of BabySeq, which began participant recruitment in January 2023, examines GS outcomes in a larger, more diverse cohort of more than 500 infants up to one year of age recruited from pediatric clinics at several sites across the United States. The trial aims for families who self-identify as Black/African American or Hispanic/Latino to make …

The Babyseq Project: A Clinical Trial Of Genome Sequencing In A Diverse Cohort Of Infants, Hadley Stevens Smith, Bethany Zettler, Casie A Genetti, Madison R Hickingbotham, Tanner F Coleman, Matthew Lebo, Anna Nagy, Hana Zouk, Lisa Mahanta, Kurt D Christensen, Stacey Pereira, Nidhi D Shah, Nina B Gold, Sheyenne Walmsley, Sarita Edwards, Ramin Homayouni, Graham P Krasan, Hakon Hakonarson, Carol R Horowitz, Bruce D Gelb, Bruce R Korf, Amy L Mcguire, Ingrid A Holm, Robert C Green

Center for Medical Ethics and Health Policy Staff Publications

Efforts to implement and evaluate genome sequencing (GS) as a screening tool for newborns and infants are expanding worldwide. The first iteration of the BabySeq Project (2015-2019), a randomized controlled trial of newborn sequencing, produced novel evidence on medical, behavioral, and economic outcomes. The second iteration of BabySeq, which began participant recruitment in January 2023, examines GS outcomes in a larger, more diverse cohort of more than 500 infants up to one year of age recruited from pediatric clinics at several sites across the United States. The trial aims for families who self-identify as Black/African American or Hispanic/Latino to make …

Parallel Electrophysiological Abnormalities Due To Covid-19 Infection And To Alzheimer’S Disease And Related Dementia, Yang Jiang, Jennifer Neal, Pradoldej Sompol, Görsev Yener, Xianghong Arakaki, Christopher M. Norris, Francesca R. Farina, Agustin Ibanez, Susanna Lopez, Abdulhakim Al-Ezzi, Voyko Kavcic, Bahar Güntekin, Claudio Babiloni, Mihály Hajós

Neurology Faculty Publications

Many coronavirus disease 2019 (COVID-19) positive individuals exhibit abnormal electroencephalographic (EEG) activity reflecting “brain fog” and mild cognitive impairments even months after the acute phase of infection. Resting-state EEG abnormalities include EEG slowing (reduced alpha rhythm; increased slow waves) and epileptiform activity. An expert panel conducted a systematic review to present compelling evidence that cognitive deficits due to COVID-19 and to Alzheimer’s disease and related dementia (ADRD) are driven by overlapping pathologies and neurophysiological abnormalities. EEG abnormalities seen in COVID-19 patients resemble those observed in early stages of neurodegenerative diseases, particularly ADRD. It is proposed that similar EEG abnormalities in …

A Qualitative Study Exploring Graduated Medical Residents’ Research Experiences, Barriers To Publication And Strategies To Improve Publication Rates From Medical Residents, Dorothy Kamya, Brigette Macharia, Wangari Siika, Caroline Mbuba

Anaesthesiology, East Africa

Background: In Kenya, postgraduate medical residents must complete a research dissertation for their Master of Medicine studies. However, the subsequent publication rate is lower than in higher-income settings, limiting the availability of population-specific data. This study explored residents’ experiences with research, reasons for the low publication rate, and strategies to improve publication rates.

Methods: In-depth interviews were conducted with 9 faculty members and non-academic support staff, as well as 18 Master of Medicine graduates who had successfully completed their research projects, to investigate their experiences with conducting, supervising, and publishing research. The interview data was analysed using inductive …

Non-Partner Sexual Violence Among International College Students In The United States, Kruti S. Chaliawala, Rebecca A. Vidourek, Keith A. King

Dignity: A Journal of Analysis of Exploitation and Violence

The prevalence of non-partner sexual violence among college students is a pressing concern that demands urgent attention. Although an integral part of the education system, international college students are often underrepresented in various studies. This calls attention to understanding the cultural nuances and multiple factors affecting this population. The current research delves into the experiences of sexual abuse among international students within the last 12 months, focusing specifically on incidents where sexual penetration or unwanted sexual touching occurred without consent. The study sheds light on the frequency and demographics associated with these distressing incidents using data from a large-scale survey …

Update On Recommendations For Surveillance For Children With Predisposition To Hematopoietic Malignancy, Luke D Maese, Marcin W Wlodarski, Sun Young Kim, Alison A Bertuch, Gaelle Bougeard, Vivian Y Chang, Lucy A Godley, Payal P Khincha, Roland P Kuiper, Harry Lesmana, Rose B Mcgee, Lisa J Mcreynolds, Julia Meade, Sharon E Plon, Sharon A Savage, Sarah R Scollon, Hamish S Scott, Michael F Walsh, Kim E Nichols, Christopher C Porter

Center for Medical Ethics and Health Policy Staff Publications

Children harboring certain germline gene variants have an increased risk of developing myelodysplastic syndrome (MDS) and other hematopoietic malignancies (HM), such as leukemias and lymphomas. Recent studies have identified an expanding number of these predisposition genes, with variants most prevalent in children with MDS but also found in children with other HM. For some hematopoietic malignancy predispositions (HMP), specifically those with a high risk of MDS, early intervention through hematopoietic stem cell transplantation can favorably impact overall survival, providing a rationale for rigorous surveillance. A multidisciplinary panel of experts at the 2023 AACR Childhood Cancer Predisposition Workshop reviewed the latest …

“The Truth Should Not Be Hidden”: Experiences And Recommendations Of Individuals Making Npe Discoveries Through Genetic Genealogy Databases, Olivia Schuman, Caroline Beit, Jill Oliver Robinson, Whitney Bash Brooks, Amy L Mcguire, Christi Guerrini

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Fueled by direct-to-consumer (DTC) genetic testing and genetic-relative finder services, some participants in genetic genealogy databases are making "not parent expected" (NPE) discoveries. To better understand experiences of this phenomenon, we surveyed a large cohort of users of genetic relative finder (GRF) services concerning their experiences after an NPE discovery.

Methods: Using thematic analysis, we analyzed responses from a cohort of GRF users (n = 646) to open-ended survey items to understand these experiences and their recommendations for DTC genetic testing companies and other GRF users.

Results: We found that individuals had both positive and negative emotional experiences related …

The Role Of Policy Entrepreneurs In Understanding Oral Health Care Policy: A Case Study Approach Analyzing Multiple Streams Framework In Nc Oral Health Policy, Lori Gordon Hendrick

School of Public Service Theses & Dissertations

The United States Surgeon General has defined oral diseases as a “silent epidemic” that affects the most vulnerable citizens. More often, this includes those from low socio-economic backgrounds, children, elderly, and many members of ethnic minority groups. Although preventative and treatment modalities have improved over the past fifty years, some Americans continue to have little to no access to educational and preventative programs. The lack of access to dental care for all ages and oral health care literacy remains one of the largest health concerns for American citizens making it a “wicked problem”. Historically, raising Medicaid enrollment has failed to …

Applying A Health Equity Lens To Better Understand End-Of-Life Prognostication, Newsha Nikzad, Joelle Robertson-Preidler, Faith E Fletcher

Center for Medical Ethics and Health Policy Staff Publications

Racial and ethnic inequity exists throughout the lifespan, including at the end of life (EOL). Although prognostication is inherently fraught with uncertainty, many underrepresented minorities get prognoses that are overly optimistic, which can exacerbate inequity by depriving patients of details needed to make informed decisions and plan for EOL care. This article applies a health equity lens to facilitate better ethical and clinical understandings of how to care for patients of color more equitably at the EOL.

Racial Equity, Diversity And Inclusion In Bioethics: Recommendations From The Association Of Bioethics Program Directors Presidential Task Force, Sandra Soo-Jin Lee, Alexis Walker, Shawneequa L Callier, Faith E Fletcher, Charlene Galarneau, Nanibaa' Garrison, Jennifer E James, Renee Mcleod-Sordjan, Ubaka Ogbogu, Nneka Sederstrom, Patrick T Smith, Clarence H Braddock, Christine Mitchell

Center for Medical Ethics and Health Policy Staff Publications

Recent calls to address racism in bioethics reflect a sense of urgency to mitigate the lethal effects of a lack of action. While the field was catalyzed largely in response to pivotal events deeply rooted in racism and other structures of oppression embedded in research and health care, it has failed to center racial justice in its scholarship, pedagogy, advocacy, and practice, and neglected to integrate anti-racism as a central consideration. Academic bioethics programs play a key role in determining the field's norms and practices, including methodologies, funding priorities, and professional networks that bear on equity, inclusion, and epistemic justice. …

Documented Newborn Hearing Screenings In Florida Administrative Hospital Data: State Policy Compliance By Hospital Types, Teresa Anthony, Blake Barrett, Adam Brown, Jessica Ryan

Journal of Early Hearing Detection and Intervention

Purpose: Florida policy mandates newborn hearing screenings (NBHS) in hospitals. U.S. inpatient administrative hospital data reflects low rates of documented screenings. This analysis investigates inconsistencies between Florida policy and administrative records.

Method: Analysis of Florida statutory language was completed. Florida hospital administrative data was retrospectively analyzed using various statistical methods to explore differences in proportions of documented NBHS among distinct hospital types based on profit and teaching statuses.

Results: Florida mandate requires NBHS completion in the hospital prior to discharge from the birth facility or within 21 days after birth and allows for billing a third-party payer. …

Implementation Of Sugar-Sweetened Beverages Excise Policy And Its Implications In Various Countries: Literature Review, Roissiana Khotami, Vetty Yulianty, Ratih Oktarina

Journal of Indonesian Health Policy and Administration

The prevalence of diabetes in the world is projected to continue to increase to 643 million in 2030. Indonesia is ranked 7th with the highest number of diabetes mellitus sufferers and the only one in Southeast Asia with a total of 10.7 million sufferers. Consumption of sweetened drinks is the most dominant factor in the incidence of diabetes mellitus in Indonesia. Indonesia ranks third highest in Southeast Asia in sweetened drink consumption. Excise on sweetened drinks is an effective intervention to reduce consumption of sweetened drinks, but Indonesia has not yet implemented it. This research aims to determine the implementation …

Selected U.S. Government Statistical Agencies And Their Data, Bert Chapman

Libraries Faculty and Staff Presentations

Provides introductory and detailed overview of U.S. Government agencies statistics. Includes examples of how an individual U.S. law authorizes government agencies to compile statistics for particular congressional committees and the general public. Statistics cover topics such as demography, defense, foreign assistance, economic growth, criminal justice, energy, Social Security, and Medicare.

Qualitative Investigation Of School Experiences In Children With Osteogenesis Imperfecta, Julia M Morales, Andrew D Wiese, Whitney S Shepherd, Gianna M Colombo, Selena Guo, Justin Qian, W Conor Rork, Hannah Cho, Kristin M Kostick-Quenet, Dianne Nguyen, Erin M Carter, Michelle L Fynan, Members Of The Bbdc, Chaya N Murali, Marie-Eve Robinson, Sophie C Schneider, Brendan Lee, V Reid Sutton, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Osteogenesis imperfecta (OI) is a rare genetic chronic condition leading to fragile bones and frequent bone fractures with wide-reaching health implications. Current literature suggests that children with chronic diseases face unique challenges at school, yet research regarding educational concerns among those with OI is limited. The present study involved qualitative analysis of semi-structured interviews with 10 children with OI and 12 caregivers of a child with OI. Children and caregivers participated in the interviews individually; they were not dyads of participants. Half of the caregivers who participated had OI themselves. The interviews were coded, and six themes were identified: (1) …

Germline Mutations In A G Protein Identify Signaling Cross-Talk In T Cells, Hyoungjun Ham, Huie Jing, Ian T Lamborn, Megan M Kober, Alexey Koval, Yamina A Berchiche, D Eric Anderson, Kirk M Druey, Judith N Mandl, Bertrand Isidor, Carlos R Ferreira, Alexandra F Freeman, Sundar Ganesan, Meliha Karsak, Peter J Mustillo, Juliana Teo, Zarazuela Zolkipli-Cunningham, Nicolas Chatron, François Lecoquierre, Andrew J Oler, Jana Pachlopnik Schmid, Douglas B Kuhns, Xuehua Xu, Fabian Hauck, Waleed Al-Herz, Matias Wagner, Paulien A Terhal, Mari Muurinen, Vincent Barlogis, Phillip Cruz, Jeffrey Danielson, Helen Stewart, Petra Loid, Sebastian Rading, Boris Keren, Rolph Pfundt, Kol A Zarember, Katharina Vill, Lorraine Potocki, Kenneth N Olivier, Gaetan Lesca, Laurence Faivre, Melanie Wong, Anne Puel, Janet Chou, Maud Tusseau, Niki M Moutsopoulos, Helen F Matthews, Cas Simons, Ryan J Taft, Ariane Soldatos, Etienne Masle-Farquhar, Stefania Pittaluga, Robert Brink, Danielle L Fink, Heidi H Kong, Juraj Kabat, Woo Sung Kim, Tatjana Bierhals, Kazuyuki Meguro, Amy P Hsu, Jingwen Gu, Jennifer Stoddard, Benito Banos-Pinero, Maria Slack, Giampaolo Trivellin, Benoît Mazel, Maarja Soomann, Samuel Li, Val J Watts, Constantine A Stratakis, Maria F Rodriguez-Quevedo, Ange-Line Bruel, Marita Lipsanen-Nyman, Paul Saultier, Rashmi Jain, Daphne Lehalle, Daniel Torres, Kathleen E Sullivan, Sébastien Barbarot, Axel Neu, Yannis Duffourd, Morgan Similuk, Kirsty Mcwalter, Pierre Blanc, Stéphane Bézieau, Tian Jin, Raif S Geha, Jean-Laurent Casanova, Outi M Makitie, Christian Kubisch, Patrick Edery, John Christodoulou, Ronald N Germain, Christopher C Goodnow, Thomas P Sakmar, Daniel D Billadeau, Sébastien Küry, Vladimir L Katanaev, Yu Zhang, Michael J Lenardo, Helen C Su

Center for Medical Ethics and Health Policy Staff Publications

Humans with monogenic inborn errors responsible for extreme disease phenotypes can reveal essential physiological pathways. We investigated germline mutations in GNAI2, which encodes Gαi2, a key component in heterotrimeric G-protein signal transduction usually thought to regulate adenylyl cyclase-mediated cAMP production. Patients with activating Gαi2 mutations had clinical presentations that included impaired immunity. Mutant Gαi2 impaired cell migration and augmented responses to T cell receptor (TCR) stimulation. We found that mutant Gαi2 influenced TCR signaling by sequestering the GTPase-activating protein RASA2, thereby promoting RAS activation and increasing downstream ERK/MAPK and PI3K-AKT S6 signaling to drive cellular growth and proliferation.