Disrupting the information order in health care: Institutions, policy regimes, and the value of data

Social Science & Medicine · 2026-01-30 · 1 citations

This study analyzes how U.S. healthcare organizations view regulatory changes to the accessibility of patient health information as part of the 21 st Century Cures Act . Rulemaking for the Cures Act recommended a technical change that would enable vendors in the consumer marketplace outside the institutional context and special data protections of health care to gain access to private patient data. We examine organizational stakeholders’ comments during the Notice of Public Rulemaking to show how organizational actors both inside and outside of health care use the institutional values and relationships of health care versus the market to evaluate the impact of the technical change. Healthcare insiders use professional ethics and doctor-patient relationships to defend the status quo of data protections in health care. Outsiders, such as consumer health apps, use the logic of the market to try to disrupt established institutions in health care, challenging clinical control and use of patient information, as well as the institutionalized property rights and data protections of private health data. The technical change alone cannot disrupt and redistribute the control and value of patient data, but it creates an opening that enables outsiders to challenge the existing meaning and management of information in health care in the United States. • The 21 st Century Cures Act API Rule increases sharing of patient health information • Health apps outside healthcare can gain access to previously protected patient data • Healthcare insiders defend the status quo to protect patients and themselves • Tech company outsiders seek to disrupt the status quo to profit from patient data • Disruption to data governance challenges professions, privacy, and property rights

Utilization and patient experiences of telehealth among Medicaid expansion enrollees

Health Affairs Scholar · 2025-03-21 · 1 citations

Telehealth can promote access to health care, especially among individuals enrolled in Medicaid. However, we currently lack data on patient experiences of telehealth from low-income individuals. Using data collected in 2021 and 2022 from a statewide survey of enrollees in the Heathy Michigan Plan, Michigan's Medicaid expansion program, we conducted an analysis to study patients' experiences of using telehealth. Approximately one-third of enrollees reported a telehealth visit within the past year. Individuals reporting barriers to primary care were more likely to have had a telehealth visit compared with those reporting no barriers to primary care. Among those who had a telehealth visit, most individuals reported that telehealth provided care they could not or would not otherwise receive (63.3%; 95% CI: 58.9%-67.5%) and were satisfied with telehealth adequately addressing their health concerns (92.1%; 95% CI: 89.4%-94.1%). Our findings that telehealth was largely accepted among Medicaid enrollees can help inform policy that shapes its future implementation.

Help Me Help You: Privacy Considerations for Third Party IoT Device Repair

Proceedings on Privacy Enhancing Technologies · 2025-07-13

Smart home devices are becoming increasingly complex and data-rich. The inevitable repair of these devices will be both difficult and privacy-sensitive. A "HandyTech"—a technician for home Internet of Things (IoT) system repair—has the potential to lower barriers to repair, but privacy questions remain: Are people willing to use a HandyTech to fix a broken home IoT device despite the inherent privacy risk (i.e., allowing a third party to access potentially sensitive IoT data)? We explore this question through a vignette-based, multi-factorial survey with a nationally representative sample of adults in the United States. We further ask whether types of devices (i.e., smart speakers, refrigerators, and CPAP machines) and factors adjacent to privacy and associated with the HandyTech's work (i.e., scope of access, state-based licensing requirements, and transparency provisions) affect decisions to use or not use a HandyTech. We find that some demographic groups are more willing than others to use a HandyTech (e.g., younger age groups, those with children in the home). Current ownership of more types of smart devices increases willingness to use a HandyTech, while greater concerns over general IoT privacy decreases willingness to use a HandyTech. Device-specific perceptions also mattered, such that perceived urgency to fix is strongly associated with willingness to use a HandyTech, but concern over that device's privacy is not. In addition, reduced scope of access and increased transparency by the HandyTech statistically increased willingness to use a HandyTech. In closing, we recommend takeaways that developers and policymakers can engage with to decrease privacy concerns and increase the adoption of third-party IoT repair.

Patient-centered communication, disparities, and patient portals in the US, 2017-2022

The American Journal of Managed Care · 2024-01-01 · 9 citations

OBJECTIVES: To identify the relationship between patient-centered communication and portal offers and use among insured adult patients and to understand the role of patient-centered communication in equitable access to portals. STUDY DESIGN: Using data from 4 cycles of the Health Information National Trends Survey across 2017-2022, we determined how patient-centered communication and sociodemographic characteristics of adult insured patients in the US are associated with offers of and access to online patient portals. METHODS: We conducted multivariable logistic regression analysis to examine associations of patient-centered communication and sociodemographic characteristics of adult insured patients in the US with offers of and access to online patient portals. RESULTS: Across the period of 2017-2022, approximately two-thirds of insured adult patients on average reported being offered a patient portal, and approximately half reported accessing a portal. Patients with lower-than-average patient-centered communication and those who are men, are Hispanic, have less than a college degree, and have no internet are less likely than their counterparts to report being offered or accessing a portal. CONCLUSIONS: Although patient-centered communication is an important factor in facilitating patient portal offers and access, it does not appear to be a driver of demographic divides in portal use.

Evolving Roles of Anatomists in Modern Medical Education

Sri Lanka Anatomy Journal · 2024-12-04

No abstract available

Your PCP Has Entered the Chat: How Asynchronous Portal Messages Can Be Leveraged for Chronic Disease Management Outside of the Clinic Visit

Journal of General Internal Medicine · 2024-12-20 · 3 citations

Changes in Caregivers’ Use of the Online Medical Record Pre- and Post-COVID: Analysis of the Health Information National Trends Survey, 2018–2022

Medical Care Research and Review · 2024-12-09 · 2 citations

Little is known about online medical record (OMR) use among caregivers, including changes in OMR use through the COVID-19 pandemic. This study compares OMR use among caregivers and non-caregivers before and during the COVID-19 pandemic, identifies reasons for non-use, and examines the association between caregiving status and characteristics with OMR use. Secondary data analysis of the nationally representative Health Information National Trends Survey data from 2018 to 2022 ( n = 14,034). Caregivers were more likely to use the OMR post-COVID (51.8%) compared with pre-COVID (44.7%). Caregiving was significantly associated with increased likelihood of OMR use post-COVID (odds ratio = 1.67), but not pre-COVID. The increased use of OMR among caregivers during COVID-19 highlights the potential of OMRs as a support tool for caregivers’ health and well-being. Interventions and policies to improve OMR engagement must address persisting disparities across demographic groups and encourage caregivers’ OMR use to support their role and enhance their personal health management.

Provision of Social Care Services by US Hospitals

Milbank Quarterly · 2023-04-26 · 12 citations

Policy Points Hospitals address population health needs and patients' social determinants of health by offering social care services. Tax-exempt hospitals are required to invest in community benefits, including social care services programs, though most community benefits spending is toward unreimbursed health care services. Tax-exempt hospitals offer about 36% more social care services than for-profit hospitals. Among tax-exempt hospitals, those that allocate more resources to community benefits spending offer more types of social care services, but those in states with minimum community benefits spending requirements offer fewer social care services. Policymakers may consider specifically incentivizing community benefits expenditures toward particular social care services, including linking tax exemptions to implementation, utilization, and outcome targets, to more directly help patients. CONTEXT: Despite growing interest in identifying patients' social needs, little is known about hospitals' provision of services to address them. We identify social care services offered by US hospitals and determine whether hospital spending or state policies toward community benefits are associated with the provision of these services by tax-exempt hospitals. METHODS: National secondary data about hospitals were collected from the American Hospital Association Annual Survey, with additional Internal Revenue Service (IRS) Form 990 data on community benefits spending from CommunityBenefitInsight.org and state-level community benefits policies from HilltopInstitute.org. Descriptive statistics for types of social care services and hospital characteristics were calculated, with bivariate chi-square and t-tests comparing for-profit and tax-exempt hospitals. Multivariable Poisson regression was used to estimate associations between hospital characteristics and types of services offered and among tax-exempt hospitals to estimate associations between social care services and community benefits spending and policies. Multivariable logistic regressions modeled associations between community benefits spending/policies and each type of social care services. FINDINGS: Private US hospitals offered an average of 5.7 types of social care services in 2018. Tax-exempt hospitals offered about 36% more social care services than for-profit hospitals. Larger number of beds, health system affiliation, and having community partnerships are associated with more social care services, whereas rural hospitals and those managed under contract offered fewer social care services. Among tax-exempt hospitals, greater community benefits spending is associated with offering more total (incidence rate ratio [IRR] = 1.10, p < 0.01) and patient-focused social care services (IRR = 1.16, p < 0.01). Hospitals in states with minimum community benefits spending requirements offered significantly fewer social care services. CONCLUSIONS: Although tax-exempt status and increased community benefits spending were associated with increased social care services provision, the observation that certain hospital characteristics and state minimum community benefits spending requirements were associated with fewer social care services suggests opportunities for policy reform to increase social care services implementation.

The HandyTech's Coming Between 1 and 4: Privacy Opportunities and Challenges for the IoT Handyperson

2023-11-23 · 2 citations

Smart homes are gaining popularity due to their convenience and efficiency, both of which come at the expense of increased complexity of Internet of Things (IoT) devices. Due to the number and heterogeneity of IoT devices, technologically inexperienced or time-burdened residents are unlikely to manage the setup and maintenance of IoT apps and devices. We highlight the need for a "HandyTech": a technically skilled contractor who can set up, repair, debug, monitor, and troubleshoot home IoT systems. In this paper, we consider the potential privacy challenges posed by the HandyTech, who has the ability to access IoT devices and private data. We do so in the context of single and multi-user smart homes, including rental units, condominiums, and temporary guests or workers. We examine the privacy harms that can arise when a HandyTech has legitimate access to information, but uses it in unintended ways. By providing insights for the development of privacy control policies and measures in-home IoT environments in the presence of the HandyTech, we capture the privacy concerns raised by other visitors to the home, including temporary residents, part-time workers, etc. This helps lay a foundation for the broad set of privacy concerns raised by home IoT systems.

Family Caregivers’ Experiences With Telehealth During COVID-19: Insights From Michigan

The Annals of Family Medicine · 2022-01-01 · 33 citations

Telehealth can benefit older adults during COVID-19. The purpose of this study was to understand benefits and barriers to telemedicine visits for older adults from the perspectives of family caregivers. A cross-sectional, online survey was conducted across the state of Michigan with family caregivers (n = 90) who responded to open- and closed-ended questions. Perceived benefits of telemedicine included access and rapport; barriers included the appropriateness of telemedicine for certain health care needs. Telemedicine is a likely to remain beyond COVID-19 and can facilitate access to and continuity of care. There are barriers, however, that must be addressed, especially among older patients.