Patients want to download their own health data, report shows

Patients want to download their own health data, report shows

With the deadline quickly approaching for healthcare providers to implement the new information blocking rules put in place under the 21st Century Cures Act, a new survey suggests that patients are on board with the changes to come.

The survey commissioned by Pew Charitable Trusts found that the majority of patients want easy access to their health data, specifically via applications on mobile devices. Patients also generally support allowing different healthcare providers to share data between electronic health records systems when caring for the same patient.  

“Generally, respondents support sharing key information that federal interoperability policies don’t currently prioritize,” noted Ben Moscovitch, health IT director at Pew Charitable Trusts, in a blog post about the findings.

“For example, more than two-thirds want their different doctors, hospitals, and other health care providers to share advanced care plans or end-of-life preferences, images, and family medical histories,” Moscovitch continued.  


At a time when many people have grown to expect convenience and accessibility from necessary services, it may come as little surprise that this expectation extends to healthcare as well.  

According to Pew, the survey included a nationally representative sample of 1,213 adults and was conducted online and by phone between June 1 and July 3.  

Many respondents expressed interest in having their healthcare records readily available, with 61% saying they wanted to download them to mobile device apps. Some 87% specifically said they wanted to be able to access images such as X-rays in their EHRs, although the new federal rules do not require them to be available for downloading.  

However, individuals also expressed privacy concerns, saying they had a strong preference for apps that had been preapproved by healthcare providers or independent certification boards.

Most respondents also said they would be in favor of enabling healthcare providers to share their information among EHR systems, but similarly raised objections about how certain information – such as substance use history or behavioral health backgrounds – might be treated.   

With regard to details on social determinants of health in particular, less than half of respondents said they felt comfortable with that information being readily shareable among providers.

About three-quarters of respondents also said they supported federal standards for patient matching, and roughly two-thirds were comfortable with the idea of using biometrics or unique codes to improve matching. Notably, respondents of color were less likely to support biometrics as their first choice for such a purpose.

“As controversies around racial bias in the use of facial recognition technology have shown, questions about its effectiveness and implementation must be addressed,” wrote Moscovitch.  


Once an enforcement mechanism is in place, healthcare providers, vendors, health information exchanges and other organizations could be subject to up to $1 million in penalties for interfering with the access, exchange or use of electronic health data.  

Although the COVID-19 pandemic has triggered some flexibility in terms of implementation deadlines, it has also presented a clear justification for easing information sharing among healthcare entities.   

A plurality of respondents to the Pew survey said that the pandemic made them more likely to support enabling providers to share EHR information.  


“This survey shows that Americans recognize the importance of getting their own health data and sharing it with the clinicians that care for them,” wrote Moscovitch. “They want the government to make that process easier and more accurate – and to include more data than is being transmitted today.   

“Recent federal rules that encourage sharing EHRs with patients are a first step, but future policies should focus on ensuring the right data goes where it’s needed, while respecting and addressing privacy concerns,” he said.

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Email: [email protected]
Healthcare IT News is a HIMSS Media publication.

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