Sufferers have a right of access to their well being data beneath the Well being Insurance coverage Portability and Accountability Act (HIPAA) Privateness Rule. Latest coverage efforts purpose to simplify and improve affected person entry to digital well being data (EHI), as easy access to health information enables patients to observe well being circumstances, observe remedy plans, and discover and repair medical report discrepancies. Affected person entry additionally performs a significant function in selling patient-centered care by enabling people to make extra knowledgeable selections about their well being.
Enabling affected person entry by way of well being IT
Traditionally, affected person entry to EHI has largely occurred by way of affected person portals, which allow sufferers to entry their well being data on-line. In 2019, about 60% of office-based physicians and almost all hospitals (97%) enabled sufferers to view their EHI utilizing a affected person portal. Nonetheless, not all sufferers know in regards to the availability of this entry possibility, and at instances have to be supplied account data or request account creation to take action. That is additionally true for extra trendy strategies of accessing EHI since portal credentials are usually required to authorize third-party well being apps to obtain affected person knowledge. As of 2020, about six in 10 individuals nationwide reported being offered a patient portal and almost 40% reported accessing it no less than as soon as previously 12 months. This marks important progress from 2014 when solely 42% of people had been provided portal entry and 25% logged in. Whereas general development in affected person portal engagement is encouraging, prior research have recognized persistent disparities in patients’ access and use of online medical records, together with racial and ethnic disparities in sufferers being provided entry to their portal – an necessary precursor to entry and use.
Disparities in affected person entry
To know whether or not these racial and ethnic disparities persist, a recent ONC study leveraged the newest out there knowledge from the Health Information National Trends Survey to determine racial and ethnic disparities in affected person portal provides, entry, and use. The examine additionally examined the function of suppliers in facilitating entry to EHI by providing affected person portals and inspiring their use.
Total, we discovered that in 2019 and 2020, Black and Hispanic people had been provided and accessed affected person portals at considerably decrease charges than white people. Even after accounting for different elements which will affect affected person engagement – resembling a person’s age, gender, schooling, or well being standing – racial and ethnic disparities in affected person portal provides and entry continued: Black and Hispanic people had been considerably much less prone to report being provided and subsequently accessing their portal in comparison with their white counterparts. Nonetheless, once we examined entry and use amongst those that reported being provided a portal, disparities largely diminished – which suggests variations in entry had been possible pushed by disparities in being provided a portal.
% of People who had been Provided and Accessed a Affected person Portal in 2019-2020, by Race/Ethnicity
Supply: HINTS 5, Cycle 3 (2019) and Cycle 4 (2020).
Furthermore, we discovered that people who had been provided a affected person portal and inspired by their well being care supplier to make use of it had been extra prone to entry it. The total examine additional delves into the impact of supplier encouragement amongst completely different racial/ethnic teams and explores causes for non-use amongst those that had been provided a portal however didn’t use it. Taken collectively, our findings level to the necessary function of well being care suppliers in rising entry to EHI by providing portals and inspiring their use.
Constructing fairness into design
To reap the complete advantages of polices aimed toward rising affected person entry to EHI, it’s important to foster practices that result in equitable entry and use. This consists of establishing greatest practices for data sharing, addressing access-related obstacles to make use of, and assuaging affected person issues across the privateness and safety of EHI – which proceed to play a task in shaping particular person preferences round accessing their EHI by way of affected person portals and different trendy strategies.
To assist advance affected person entry to EHI, the ONC Cures Act Closing Rule referred to as on builders of licensed well being IT to undertake standards-based utility programming interfaces (APIs) that allow sufferers to entry their EHI utilizing well being apps by way of their smartphone or different strategies. This marks an necessary step in direction of rising affected person entry to EHI as research have proven that Black and Hispanic portal users are more likely to use mobile devices to access EHI, and customary, non-proprietary APIs provide the chance for sufferers to make use of a wider choice of apps to entry and handle their data . Nonetheless, since portal entry stays a prerequisite for accessing EHI by way of a well being app, disparities in provides can have downstream implications for affected person entry by way of third social gathering apps. Subsequently, eliminating racial and ethnic disparities in affected person portal provides and building equity into design is important to making sure equitable entry and use of well being apps. Systematic, organization-level modifications (e.g., universal access insurance policies), technological enhancements (e.g., enhancing the language accessibility of portals), and educational and training materials that concentrate on each sufferers and suppliers will help enhance accessibility and facilitate equitable use.
Further Assets
Patient Access Resources for Individuals: Get it, Check it, Use it!
Patient Access Resources for Providers
Patient Access Resources for Developers, & EHR Vendors
