Chelsea Richwine; Wes Barker; Jordan Everson and Vaishali Patel | December 11, 2023
The world is best off and getting higher, in comparison with fashionable opinion and what’s broadcast on the information, says Hans Rosling and his co-authors, utilizing easy, complete measures, in Factfulness. Typically taking a step again and looking out on the huge image (and the info) is necessary to take inventory of precise progress and the required work to come back. In that spirit, we’re kicking off a brand new weblog collection: “A Decade of Knowledge Examined.” These posts will present a complete have a look at measures and metrics we’ve tracked for ten or extra years to evaluate progress on necessary ONC mission actions and assist chart a path ahead on the work nonetheless to come back. We kick off the collection with a have a look at Affected person Entry to Digital Well being Data.
In the event you construct it, will they arrive?
In 2013, 4 in 10 non-federal acute care hospitals and one-third of office-based physicians had adopted digital well being report (EHR) techniques that enabled sufferers to view their on-line medical data. Quick ahead simply two years later and the proportion of EHRs with these affected person entry capabilities elevated greater than two-fold amongst hospitals and physicians. At present, almost all non-federal acute care hospitals and two-thirds of office-based physicians have EHR techniques that allow sufferers to view their digital well being data on-line, usually by way of patient portals or smartphone health apps.
The broad adoption of EHRs with affected person engagement functionalities marks an necessary paradigm shift in well being care: tens of thousands and thousands of sufferers can now electronically entry their well being data together with, medicines, check outcomes, go to summaries. In consequence, almost all sufferers visiting a hospital and lots of visiting their common doctor have the chance to develop into extra engaged of their well being and care.
This speedy transformation in suppliers’ capabilities to help sufferers’ entry to their digital well being data happened by way of federal packages applied from the HITECH Act, which referred to as for the widespread adoption and “significant use of certified EHR know-how.” Particularly, beginning in 2014, eligible suppliers had been required to undertake licensed well being IT with capabilities to allow sufferers to electronically view, download, and transmit their well being data to a 3rd social gathering. This was largely applied by way of patient portals optimized for patient engagement.
Determine 1: Hospital and doctor capabilities to allow affected person digital entry to well being data
Supply: Doctor knowledge come from the Nationwide Digital Well being Data Survey; Hospital knowledge come from the American Hospital Affiliation Data Expertise Complement. Notes: This determine exhibits the % of office-based physicians (Doctor – View) and non-federal acute care hospitals (Hospital – View) with an EHR that allows sufferers to view their well being data of their on-line medical report or affected person portal. In 2013 and 2014, the share of physicians with EHRs able to enabling sufferers to view, obtain, or transmit their well being data electronically is used as a proxy for ‘view’ capabilities.
Whereas there was speedy uptake of EHRs with capabilities to allow affected person entry amongst physicians and hospitals, particular person use of this entry by way of affected person portals elevated extra step by step from 2014 to 2020. Utilization quickly accelerated between 2020 and 2022 when the % of sufferers who accessed their affected person portal jumped by 50 percent. By 2022, greater than half of people nationally reported accessing their well being data on-line by way of an app or affected person portal that was provided to them by a well being care supplier or insurer – a greater than twofold improve since 2014.
Determine 2: People’ who had been provided and accessed their on-line medical report or affected person portal
Supply: Well being Data Nationwide Tendencies Survey. Notes: This determine exhibits the % of people who reported ever being provided on-line entry to their medical data (e.g., a affected person portal) by their well being care supplier (HCP) or insurer and the % people who reported being provided and accessing their on-line medical data (OMR) or affected person portal not less than as soon as in that previous 12 months.
This acceleration in patient access was possible pushed by a number of components together with larger demand for accessing and sharing well being data throughout or following telehealth visits and viewing COVID-19 check outcomes. Moreover, sufferers extra regularly used affected person portals to message their suppliers (64% in 2022, up from 53% in 2018, previous to the pandemic). To help this rising demand, there was additionally substantial progress in well being care suppliers offering access to patient portals and inspiring their use. The upward development in affected person entry may additionally mirror normal will increase in people’ consolation utilizing know-how to handle their well being care and track progress on health-related goals.
Moreover, progress in affected person entry may additionally be a results of the broader shift towards app-based access to electronic health information, which may make it simpler and extra handy for sufferers to interact with their well being data on-line. In 2022, greater than half of people used an app to entry their well being data on-line and these app customers accessed their data extra regularly in comparison with those that solely used a web-based portal. Laws enacted by ONC by way of the Cures Act Final Rule required licensed well being IT builders by the top of 2022 to undertake standards-based utility programming interfaces (APIs) that may allow broader affected person entry by way of apps “with out particular effort.”
What to observe over the subsequent decade
The forms of apps utilized by sufferers to entry and use their digital well being data are evolving to make it simpler for people to handle and make use of their well being knowledge. At present, the vast majority of app customers aren’t leveraging emerging third-party apps that use standards-based APIs to combination knowledge throughout a number of portals. They’re largely accessing their well being knowledge by way of apps offered by EHR builders or well being care suppliers to entry their affected person portal. Will probably be necessary to trace the event and adoption of those new applied sciences within the coming years.
Efforts are being made to make sure sufferers have well timed entry to their well being data. The just lately launched Trusted Trade and Frequent Settlement FrameworkTM (TEFCA) consists of particular person entry providers to make sure a core set of knowledge will likely be accessible amongst networks ruled by the Frequent Settlement to allow people to entry and handle their well being data. In 2020, 12% of people reported delays in receiving test results. To help sufferers’ right to access their digital well being data in a well timed method, ONC applied information blocking provisions of the Cures Act, which along with prohibiting practices which might be prone to intervene with, stop, or discourage entry, alternate, or use of digital well being data, name for the speedy launch of check outcomes to sufferers. Recent evidence exhibits that sufferers that instantly obtain check outcomes by way of their portal, slightly than ready for a name from their clinician, need to proceed receiving that data instantly slightly than ready on their clinicians to ship outcomes. Nevertheless, considerations exist in regards to the potential detrimental penalties of sharing check outcomes with out the suppliers’ rationalization, and continued monitoring will likely be necessary.
As we proceed to advance and have fun the general progress in affected person entry, it is very important acknowledge and tackle current inequities. Regardless of substantial progress in affected person engagement over the previous decade, a number of research have documented disparities in affected person entry by race and ethnicity, education, income, and different socio-demographic components. Variations in well being literacy, language barriers, privateness considerations, and restricted web entry are different persistent obstacles to attaining widespread affected person entry and use of knowledge contained in on-line medical data. ONC gives resources for patients on methods to entry their well being data on-line utilizing totally different strategies and methods to use, share and handle their well being data. Continued monitoring is required to tell efforts aimed toward assuaging persistent obstacles and guaranteeing sufferers have equitable alternatives to entry their well being data electronically.
Within the final decade, web-based affected person portals have develop into extensively accessible for enabling affected person entry and use of digital well being data, and app-based entry has made it even simpler for sufferers to entry this data. Wanting ahead, ONC will proceed efforts to make sure sufferers have well timed and safe entry to their well being data on-line, and that well being IT builders can help novel makes use of of knowledge valued by sufferers. Now that many sufferers have skilled the advantages of accessing their knowledge for the primary time, it is going to be necessary to proceed to advance affected person engagement capabilities that can drive affected person demand for accessing and utilizing data that may assist enhance well being and healthcare for all.
