Pub Date : 2025-11-24eCollection Date: 2025-12-01DOI: 10.1093/haschl/qxaf229
Amresh D Hanchate, Stephanie K Nothelle, Bruce Kinosian, Michael P Bancks, Emilie D Duchesneau, Lindsey Abdelfattah, Jianing Guo, Mia Yang
Introduction: As Alzheimer's disease and related dementias (ADRD) progress, many individuals become homebound and increasingly depend on home-based medical care (HBMC), such as clinician house calls. The COVID-19 pandemic spurred a rapid expansion of telemedicine under Medicare, but its impact on outpatient care by modality-HBMC, telemedicine, and office-based-among enrollees with ADRD remains unclear.
Methods: Using national Medicare claims, we examined changes in primary care visits-categorized as office-based, HBMC, and telemedicine-between the pre-expansion period (March 2019-February 2020) and the late post-expansion period (March-November 2021), when telemedicine use had stabilized. Analyses were stratified by regions with low vs high HBMC provider availability.
Results: Regions with high HBMC availability saw a 13.6% greater increase in HBMC visits and a 5.0% greater increase in all visits compared to low-availability regions. Both groups had similar increases in telemedicine and declines in office-based visits. HBMC growth reflected broader access, with more beneficiaries receiving HBMC post-expansion. However, gains were concentrated among non-Hispanic White enrollees, with no significant changes for non-Hispanic Black or Hispanic enrollees.
Conclusion: These findings suggest that Medicare's telemedicine waivers expanded, rather than replaced, HBMC. Sustaining these policies may support aging in place for individuals with dementia, though disparities in access remain a critical concern.
{"title":"Telemedicine: a substitute or complement for home-based medical care? the experience of Medicare enrollees with dementia.","authors":"Amresh D Hanchate, Stephanie K Nothelle, Bruce Kinosian, Michael P Bancks, Emilie D Duchesneau, Lindsey Abdelfattah, Jianing Guo, Mia Yang","doi":"10.1093/haschl/qxaf229","DOIUrl":"10.1093/haschl/qxaf229","url":null,"abstract":"<p><strong>Introduction: </strong>As Alzheimer's disease and related dementias (ADRD) progress, many individuals become homebound and increasingly depend on home-based medical care (HBMC), such as clinician house calls. The COVID-19 pandemic spurred a rapid expansion of telemedicine under Medicare, but its impact on outpatient care by modality-HBMC, telemedicine, and office-based-among enrollees with ADRD remains unclear.</p><p><strong>Methods: </strong>Using national Medicare claims, we examined changes in primary care visits-categorized as office-based, HBMC, and telemedicine-between the pre-expansion period (March 2019-February 2020) and the late post-expansion period (March-November 2021), when telemedicine use had stabilized. Analyses were stratified by regions with low vs high HBMC provider availability.</p><p><strong>Results: </strong>Regions with high HBMC availability saw a 13.6% greater increase in HBMC visits and a 5.0% greater increase in all visits compared to low-availability regions. Both groups had similar increases in telemedicine and declines in office-based visits. HBMC growth reflected broader access, with more beneficiaries receiving HBMC post-expansion. However, gains were concentrated among non-Hispanic White enrollees, with no significant changes for non-Hispanic Black or Hispanic enrollees.</p><p><strong>Conclusion: </strong>These findings suggest that Medicare's telemedicine waivers expanded, rather than replaced, HBMC. Sustaining these policies may support aging in place for individuals with dementia, though disparities in access remain a critical concern.</p>","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 12","pages":"qxaf229"},"PeriodicalIF":2.7,"publicationDate":"2025-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12684388/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145717090","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-21eCollection Date: 2025-11-01DOI: 10.1093/haschl/qxaf217
Andrea Odinakachukwu Orji
The long-term services and supports (LTSS) system is intended to grant Americans, requiring care that extends beyond what can be provided in a hospital and/or primary care settings alone, access to the appropriate caretakers and facilities. Federal policy has struggled to ensure sustainable access to LTSS and the workforce that provides it. In particular, Medicaid beneficiaries are required to have access to these services but still face difficulties in obtaining them. Long term care provision has traditionally been institutionally based due to funding mandated through Medicaid, but the formalized workforce cannot keep pace with an aging population. Many rely instead on informal caregivers (ie, family, friends, etc.) for their care. While populations requiring long term care prefer to receive care from the comfort of their own communities, informal caregivers are rarely compensated and often forced to juggle employment and caregiving duties. This commentary explores how mandated funding for home and community-based services (HCBS) may improve access to LTSS by mobilizing an existing informal workforce.
{"title":"Bridging the gaps: building a labor force to meet long-term care needs.","authors":"Andrea Odinakachukwu Orji","doi":"10.1093/haschl/qxaf217","DOIUrl":"10.1093/haschl/qxaf217","url":null,"abstract":"<p><p>The long-term services and supports (LTSS) system is intended to grant Americans, requiring care that extends beyond what can be provided in a hospital and/or primary care settings alone, access to the appropriate caretakers and facilities. Federal policy has struggled to ensure sustainable access to LTSS and the workforce that provides it. In particular, Medicaid beneficiaries are required to have access to these services but still face difficulties in obtaining them. Long term care provision has traditionally been institutionally based due to funding mandated through Medicaid, but the formalized workforce cannot keep pace with an aging population. Many rely instead on informal caregivers (ie, family, friends, etc.) for their care. While populations requiring long term care prefer to receive care from the comfort of their own communities, informal caregivers are rarely compensated and often forced to juggle employment and caregiving duties. This commentary explores how mandated funding for home and community-based services (HCBS) may improve access to LTSS by mobilizing an existing informal workforce.</p>","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 11","pages":"qxaf217"},"PeriodicalIF":2.7,"publicationDate":"2025-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12637202/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145590564","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-21eCollection Date: 2025-11-01DOI: 10.1093/haschl/qxaf228
Kenton J Johnston, Alexander O Everhart, Peter F Lyu, Jason M Hockenberry
The accountable care organization (ACO) model centers around primary care providers (PCPs) and undervalues the central role that specialists play for many beneficiaries with chronic conditions. This assumption informs beneficiary attribution methods for Medicare ACOs, which prioritize assignment of cost and quality accountability to PCPs over specialists. Yet, in 2023, many traditional Medicare beneficiaries with chronic conditions did not have a PCP as their predominant provider of care, limiting ACOs' ability to engage many beneficiaries with specialists as their predominant providers of care. To better engage specialists delivering chronic condition care, we recommend updating ACO policies to assign greater accountability for beneficiaries with chronic conditions to specialists.
{"title":"Specialists are central to patient chronic condition care: Medicare ACOs must adapt to this reality.","authors":"Kenton J Johnston, Alexander O Everhart, Peter F Lyu, Jason M Hockenberry","doi":"10.1093/haschl/qxaf228","DOIUrl":"10.1093/haschl/qxaf228","url":null,"abstract":"<p><p>The accountable care organization (ACO) model centers around primary care providers (PCPs) and undervalues the central role that specialists play for many beneficiaries with chronic conditions. This assumption informs beneficiary attribution methods for Medicare ACOs, which prioritize assignment of cost and quality accountability to PCPs over specialists. Yet, in 2023, many traditional Medicare beneficiaries with chronic conditions did not have a PCP as their predominant provider of care, limiting ACOs' ability to engage many beneficiaries with specialists as their predominant providers of care. To better engage specialists delivering chronic condition care, we recommend updating ACO policies to assign greater accountability for beneficiaries with chronic conditions to specialists.</p>","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 11","pages":"qxaf228"},"PeriodicalIF":2.7,"publicationDate":"2025-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12661520/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145650556","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-20eCollection Date: 2025-12-01DOI: 10.1093/haschl/qxaf224
Sarah J Marks, Kristina E Rudd, Chethan Bachireddy, Julie M Donohue, Derek C Angus, Theodore J Iwashyna, Andrew J Barnes
Introduction: Medicaid provides access to care for low-income patients facing life-threatening illnesses who are cared for in intensive care units (ICUs). Despite the growth of Medicaid coverage with the Affordable Care Act, little is known about Medicaid's role in critical care for the Medicaid Expansion population, adults ages 19-64.
Methods: Using hospital discharge data from Virginia, we examined payer composition between 2016 and 2023 and analyzed 2023 demographic and clinical data for adults ages 19-64.
Results: Medicaid's share of ICU stays more than doubled from 2016 (14.1%) to 2023 (31.8%). While only 25.6% of Medicaid hospitalizations involved ICU care, these stays account disproportionately for charges (51.7%), hospital days (36.9%), and readmissions (32.3%). Common reasons for admission include potentially preventable conditions: sepsis, diabetes, heart failure, and alcohol use. Medicaid patients, despite being younger than their commercially insured counterparts, have more comorbidities (4+ comorbidities: 49.9% vs 38.9%) and are more likely to be readmitted in adjusted models (29.7% [95% Confidence Interval: 29.1-30.4] vs 24.3% [95% Confidence Interval: 23.6%-25.1%]).
Conclusions: This work demonstrates the crucial role of Medicaid as a payer for seriously ill adults and the need for increased attention by Medicaid programs to ICU patients before, during, and after hospitalization.
简介:医疗补助计划为面临威胁生命的疾病的低收入患者提供了在重症监护病房(icu)接受治疗的机会。尽管《平价医疗法案》扩大了医疗补助的覆盖范围,但人们对医疗补助在医疗补助扩张人群(19-64岁的成年人)的重症监护方面的作用知之甚少。方法:利用弗吉尼亚州2016年至2023年的医院出院数据,研究付款人构成,并分析2023年19-64岁成年人的人口统计学和临床数据。结果:从2016年(14.1%)到2023年(31.8%),医疗补助在ICU住院的份额增加了一倍多。虽然只有25.6%的医疗补助住院涉及ICU护理,但这些住院费用(51.7%)、住院天数(36.9%)和再入院(32.3%)占不成比例。入院的常见原因包括潜在可预防的疾病:败血症、糖尿病、心力衰竭和酒精使用。尽管医疗补助患者比商业保险患者年轻,但他们有更多的合并症(4+合并症:49.9% vs 38.9%),并且在调整后的模型中更有可能再次入院(29.7%[95%置信区间:29.1-30.4]vs 24.3%[95%置信区间:23.6%-25.1%])。结论:这项工作证明了医疗补助计划作为重症成人患者的支付者的关键作用,以及医疗补助计划在ICU患者住院前、住院期间和住院后增加关注的必要性。
{"title":"Medicaid's role in critical care after Medicaid expansion: evidence from Virginia.","authors":"Sarah J Marks, Kristina E Rudd, Chethan Bachireddy, Julie M Donohue, Derek C Angus, Theodore J Iwashyna, Andrew J Barnes","doi":"10.1093/haschl/qxaf224","DOIUrl":"10.1093/haschl/qxaf224","url":null,"abstract":"<p><strong>Introduction: </strong>Medicaid provides access to care for low-income patients facing life-threatening illnesses who are cared for in intensive care units (ICUs). Despite the growth of Medicaid coverage with the Affordable Care Act, little is known about Medicaid's role in critical care for the Medicaid Expansion population, adults ages 19-64.</p><p><strong>Methods: </strong>Using hospital discharge data from Virginia, we examined payer composition between 2016 and 2023 and analyzed 2023 demographic and clinical data for adults ages 19-64.</p><p><strong>Results: </strong>Medicaid's share of ICU stays more than doubled from 2016 (14.1%) to 2023 (31.8%). While only 25.6% of Medicaid hospitalizations involved ICU care, these stays account disproportionately for charges (51.7%), hospital days (36.9%), and readmissions (32.3%). Common reasons for admission include potentially preventable conditions: sepsis, diabetes, heart failure, and alcohol use. Medicaid patients, despite being younger than their commercially insured counterparts, have more comorbidities (4+ comorbidities: 49.9% vs 38.9%) and are more likely to be readmitted in adjusted models (29.7% [95% Confidence Interval: 29.1-30.4] vs 24.3% [95% Confidence Interval: 23.6%-25.1%]).</p><p><strong>Conclusions: </strong>This work demonstrates the crucial role of Medicaid as a payer for seriously ill adults and the need for increased attention by Medicaid programs to ICU patients before, during, and after hospitalization.</p>","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 12","pages":"qxaf224"},"PeriodicalIF":2.7,"publicationDate":"2025-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12715180/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145807152","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-19eCollection Date: 2025-12-01DOI: 10.1093/haschl/qxaf221
Benjamin W Chrisinger
Introduction: States have previously requested permission from the US Department of Agricultureto implement food item restrictions within the Supplemental Nutrition Assistance Program (SNAP), though these proposals were previously rejected. The current administration is encouraging states to submit waivers for restriction and has approved 12 states to restrict SNAP starting in January 2026.
Methods: This study analyzed states' waiver proposals and approval letters to describe the landscape of forthcoming restrictions, their justifications and proposed evaluations. Framework analysis was used to identify common terms and themes between states.
Results: Soda restrictions were common across all approved waiver states, with 8 states also implementing some form of restriction on candy. As justification for restriction, states cited the "intended purpose of SNAP" for nutrition (n = 9), Medicaid and healthcare costs (n = 8), promoting healthy eating (n = 8), stewardship of taxpayer dollars (n = 7) and high SNAP spending on unhealthy goods (n = 6). Evaluations using mixed-methods and pre-post analyses were most common (n = 7), with nearly all states proposing the use of retailer data and participant surveys. Key outcomes included purchasing patterns (n = 10), dietary patterns (n = 5) and health or disease outcomes (n = 5).
Conclusion: Substantial variation in restrictions and evaluation approaches warrants attention by policymakers and researchers.
{"title":"Characteristics of state waivers to establish nutritional restrictions in the supplemental nutrition assistance program.","authors":"Benjamin W Chrisinger","doi":"10.1093/haschl/qxaf221","DOIUrl":"10.1093/haschl/qxaf221","url":null,"abstract":"<p><strong>Introduction: </strong>States have previously requested permission from the US Department of Agricultureto implement food item restrictions within the Supplemental Nutrition Assistance Program (SNAP), though these proposals were previously rejected. The current administration is encouraging states to submit waivers for restriction and has approved 12 states to restrict SNAP starting in January 2026.</p><p><strong>Methods: </strong>This study analyzed states' waiver proposals and approval letters to describe the landscape of forthcoming restrictions, their justifications and proposed evaluations. Framework analysis was used to identify common terms and themes between states.</p><p><strong>Results: </strong>Soda restrictions were common across all approved waiver states, with 8 states also implementing some form of restriction on candy. As justification for restriction, states cited the \"intended purpose of SNAP\" for nutrition (<i>n</i> = 9), Medicaid and healthcare costs (<i>n</i> = 8), promoting healthy eating (<i>n</i> = 8), stewardship of taxpayer dollars (<i>n</i> = 7) and high SNAP spending on unhealthy goods (<i>n</i> = 6). Evaluations using mixed-methods and pre-post analyses were most common (<i>n</i> = 7), with nearly all states proposing the use of retailer data and participant surveys. Key outcomes included purchasing patterns (<i>n</i> = 10), dietary patterns (<i>n</i> = 5) and health or disease outcomes (<i>n</i> = 5).</p><p><strong>Conclusion: </strong>Substantial variation in restrictions and evaluation approaches warrants attention by policymakers and researchers.</p>","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 12","pages":"qxaf221"},"PeriodicalIF":2.7,"publicationDate":"2025-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12684384/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145717094","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-19eCollection Date: 2025-11-01DOI: 10.1093/haschl/qxaf223
Inimfon Jackson, Robert Yu, Joël Fokom Domgue, Sanjay Shete
{"title":"Perceived prejudice or discrimination in medical care among US adults.","authors":"Inimfon Jackson, Robert Yu, Joël Fokom Domgue, Sanjay Shete","doi":"10.1093/haschl/qxaf223","DOIUrl":"10.1093/haschl/qxaf223","url":null,"abstract":"","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 11","pages":"qxaf223"},"PeriodicalIF":2.7,"publicationDate":"2025-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12661522/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145650573","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-19eCollection Date: 2025-11-01DOI: 10.1093/haschl/qxaf222
Molly T Beinfeld, Priyanka Ghule, Fariel LaMountain, William Wong, Stella Ko, James D Chambers
Introduction: The Inflation Reduction Act (IRA) authorizes Medicare price negotiation but includes a "special rule" deferring negotiation for biologics with "imminent" biosimilar competition. This study examined the potential impact of this provision on Medicare spending.
Methods: We modeled Medicare savings under three hypothetical scenarios. In Scenario 1, we applied historical price reductions following biosimilar entry (2017-2024) for 10 reference products and 30 biosimilars to forecast savings for ustekinumab (Stelara) after biosimilar entry. Scenario 2 estimated savings from the IRA's negotiated maximum fair price for ustekinumab. Scenario 3 modeled a modified IRA implementation policy in which ustekinumab was excluded from negotiation and replaced by palbociclib (Ibrance), an eligible high spend drug that was not selected for the first round of Medicare price negotiation.
Results: Across all biologics in our sample, historic market-weighted prices declined to 40.3% of pre-entry levels within five years of biosimilar launch. Negotiating ustekinumab under the IRA yielded greater first-year savings, but cumulative savings were highest in the modified scenario-combining negotiated discounts for palbociclib with biosimilar-driven price declines for ustekinumab.
Conclusion: Selecting biologics with near-term biosimilar competition for IRA negotiation may produce short-term savings but forgo greater long-term savings achievable through competition.
{"title":"The unintended consequences of the inflation reduction act on biosimilar market incentives and Medicare savings.","authors":"Molly T Beinfeld, Priyanka Ghule, Fariel LaMountain, William Wong, Stella Ko, James D Chambers","doi":"10.1093/haschl/qxaf222","DOIUrl":"10.1093/haschl/qxaf222","url":null,"abstract":"<p><strong>Introduction: </strong>The Inflation Reduction Act (IRA) authorizes Medicare price negotiation but includes a \"special rule\" deferring negotiation for biologics with \"imminent\" biosimilar competition. This study examined the potential impact of this provision on Medicare spending.</p><p><strong>Methods: </strong>We modeled Medicare savings under three hypothetical scenarios. In Scenario 1, we applied historical price reductions following biosimilar entry (2017-2024) for 10 reference products and 30 biosimilars to forecast savings for ustekinumab (Stelara) after biosimilar entry. Scenario 2 estimated savings from the IRA's negotiated maximum fair price for ustekinumab. Scenario 3 modeled a modified IRA implementation policy in which ustekinumab was excluded from negotiation and replaced by palbociclib (Ibrance), an eligible high spend drug that was not selected for the first round of Medicare price negotiation.</p><p><strong>Results: </strong>Across all biologics in our sample, historic market-weighted prices declined to 40.3% of pre-entry levels within five years of biosimilar launch. Negotiating ustekinumab under the IRA yielded greater first-year savings, but cumulative savings were highest in the modified scenario-combining negotiated discounts for palbociclib with biosimilar-driven price declines for ustekinumab.</p><p><strong>Conclusion: </strong>Selecting biologics with near-term biosimilar competition for IRA negotiation may produce short-term savings but forgo greater long-term savings achievable through competition.</p>","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 11","pages":"qxaf222"},"PeriodicalIF":2.7,"publicationDate":"2025-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12661528/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145650534","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-13eCollection Date: 2025-12-01DOI: 10.1093/haschl/qxaf219
Peter Doshi, Jerry Menikoff, Robert Morlock, Michael Wilkes, Deborah Zarin, John H Powers
{"title":"Availability of consent forms in ClinicalTrials.gov for industry-sponsored trials.","authors":"Peter Doshi, Jerry Menikoff, Robert Morlock, Michael Wilkes, Deborah Zarin, John H Powers","doi":"10.1093/haschl/qxaf219","DOIUrl":"10.1093/haschl/qxaf219","url":null,"abstract":"","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 12","pages":"qxaf219"},"PeriodicalIF":2.7,"publicationDate":"2025-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12680436/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145703653","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-12eCollection Date: 2025-11-01DOI: 10.1093/haschl/qxaf212
David B Muhlestein
{"title":"High prevalence of ghost rates in transparency in coverage data.","authors":"David B Muhlestein","doi":"10.1093/haschl/qxaf212","DOIUrl":"10.1093/haschl/qxaf212","url":null,"abstract":"","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 11","pages":"qxaf212"},"PeriodicalIF":2.7,"publicationDate":"2025-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12631121/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145590507","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-12eCollection Date: 2025-11-01DOI: 10.1093/haschl/qxaf210
Dena H Jaffe, Bradley A Malin, Rachele M Hendricks-Sturrup
The growing use of real-world data (RWD), particularly from electronic health records (EHRs), has heightened the need for careful attention to data privacy, utility, and transparency. We examine the complex processes involved in curating privacy-compliant EHR-derived RWD, highlighting key de-identification considerations and techniques. We emphasize the importance of aligning curation practices with privacy laws and regulations, with a particular focus on the comprehensive documentation of de-identification techniques. Such documentation should reflect intended data use, accessibility, availability, accuracy, and granularity. For researchers, greater transparency in these practices can improve compliance and lead to more robust and reliable real-world evidence. For policymakers, it provides a foundation to develop more specific and actionable guidelines and oversight mechanisms. Ultimately, highly transparent curation process enhances the reliability of RWD and supports rigorous, nuanced, and informed decision-making across the health care ecosystem.
{"title":"A real-world data challenge: guidance for aligning data privacy compliance and fit-for-purpose usability.","authors":"Dena H Jaffe, Bradley A Malin, Rachele M Hendricks-Sturrup","doi":"10.1093/haschl/qxaf210","DOIUrl":"10.1093/haschl/qxaf210","url":null,"abstract":"<p><p>The growing use of real-world data (RWD), particularly from electronic health records (EHRs), has heightened the need for careful attention to data privacy, utility, and transparency. We examine the complex processes involved in curating privacy-compliant EHR-derived RWD, highlighting key de-identification considerations and techniques. We emphasize the importance of aligning curation practices with privacy laws and regulations, with a particular focus on the comprehensive documentation of de-identification techniques. Such documentation should reflect intended data use, accessibility, availability, accuracy, and granularity. For researchers, greater transparency in these practices can improve compliance and lead to more robust and reliable real-world evidence. For policymakers, it provides a foundation to develop more specific and actionable guidelines and oversight mechanisms. Ultimately, highly transparent curation process enhances the reliability of RWD and supports rigorous, nuanced, and informed decision-making across the health care ecosystem.</p>","PeriodicalId":94025,"journal":{"name":"Health affairs scholar","volume":"3 11","pages":"qxaf210"},"PeriodicalIF":2.7,"publicationDate":"2025-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12661526/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145650561","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}