Patients Support Greater EHR Data Exchange, Access to Health Information

While most patients want greater access to personal health information and support enhanced provider-to-provider data sharing, federal health IT policy may be hindering EHR data exchange, according to a nationally representative survey conducted by Pew Charitable Trusts

Pew researchers conducted the survey in conjunction with Public Opinion Strategies and Hart Research Associates in June and July of 2020.

More than eight in ten adults (81 percent) reported that they support increased access to health data for patients and providers. Many of these respondents also called for greater safeguards to ensure their data is secure.

For instance, most respondents said that they want to use apps on smartphones, tablets, and computers to access their health information. However, after the survey pointed out that federal privacy protections do not apply to data stored on apps, the number of respondents concerned about data privacy jumped from 35 to 62 percent.

Respondents noted that extending these laws may help mitigate privacy concerns.

COVID-19 also boosted patient interest in data exchange, the survey continued. About 4 in 10 survey respondents reported that the pandemic made them more apt to support provider-to-provider data exchange efforts, as well as patient access to personal health information through apps on smartphones and other devices.

Additionally, more than two-thirds of respondents called for provider-to-provider EHR data exchange to include information that is currently not required by federal data exchange policies, such as images, advanced care plans, end-of-life preferences, and family medical histories.

The researchers found that the majority of adults, regardless of political party, also support additional federal measures to improve the accuracy of patient data sharing (82 percent of Democrats, 66 percent of independents, and 51 percent of Republicans).

What’s more, the survey revealed that two-thirds of respondents are comfortable with their providers scanning patient fingerprints or assigning individuals a unique code to improve patient matching across disparate EHR systems.

These results reveal gaps in health IT policy that may be holding EHR systems back from their true potential.

“Americans broadly support federal action to improve health data-sharing, such as the ability to access health data through apps and the creation of national standards to more accurately link patients’ records held at different facilities,” the brief authors wrote. “Fully realizing those goals, however, will require the government, EHR vendors, hospitals, and providers to act.”

The brief suggested that the Office of the National Coordinator for Health Information Technology (ONC) include more data, such as images and social determinants of health, in the United States Core Data for Interoperability (USCDI). Including this data could increase patient and provider access to this valuable information through application programming interfaces (API), Pew suggested.

Additionally, the report authors suggested that ONC and the Centers for Medicare & Medicaid Services (CMS) incentivize early adoption of APIs since ONC delayed rules from the 21st Century Cures Act that would expand API use until December 2022. They also noted that ONC should make it clear to providers that it will not delay the implementation any further.

To address patient privacy concerns, the brief called for Congress and the Department of Health & Human Services (HHS) to work together to ensure that patient data is protected. This may include updating HIPAA, the authors noted.

In terms of improving patient matching, the researchers suggested that Congress and HHS investigate whether the long-standing ban on a patient identifier should be removed. ONC should also consider how biometrics could be leveraged to address patient matching deficiencies, they added.

Finally, the authors called for policy makers to consider existing disparities in personal access to EHR data among different racial or socioeconomic groups when developing policies or regulations that aim to increase access to personal health information.