American Consumers Want Health Data Access, Improved Interoperability, Survey Finds
A recent survey reveals that most American consumers support efforts to improve how their medical information is shared among doctors and clinicians, while also responding that they want greater access to their own health data.
A majority said they are comfortable with the use of technologies such as smartphone applications to access their own electronic health records (EHR), but they voiced significant concerns about privacy when federal health data protections are not in place. The survey, commissioned by The Pew Charitable Trusts, included a nationally representative sample of more than 1,200 adults, conducted online and by phone this summer.
Sixty-one percent of adults said they would want to be able to download their records to applications on mobile devices to help them manage their own health. Although older respondents were slightly less likely to express interest, a majority of those between ages 56 and 74 (53 percent) still said they would like to download their records.
As Pew researchers noted, recently released federal regulations are designed to make that easier, although some data will not be available in an easily accessible way. For example, they said, the new federal rules don’t require that images such as CT scans and X-rays be available for download, although 87 percent of respondents said they want to be able to electronically access these types of images in their EHR.
The regulations, from the Office of the National Coordinator for Health Information Technology (ONC) and from the Centers for Medicare & Medicaid Services (CMS) promote the development of a nationally consistent patient access API (application programming interface) concept, designed to make access to their EHRs available to all patients through their smartphones.
Despite a desire for their health records, respondents also indicated significant privacy concerns that policymakers would need to consider. When informed that their health information might not be covered by existing federal privacy laws—such as HIPAA—once downloaded to an app, 9 out of 10 voiced at least some concern. Notably, third-party apps are currently not required to follow data blocking policies under ONC's rule.
To help address that, apps could be pre-approved by individual healthcare providers or independent certification boards; respondents expressed a clear preference for apps that had been pre-approved and strong discomfort for those with no third-party approval. However, this could introduce additional barriers to individuals accessing their data, as providers have previously expressed reservations about patient-facing apps, the research showed.
Meanwhile, most adults (81 percent) responded that they would support enabling different healthcare providers to share patient health record information between their EHR systems when they are caring for the same patient. Generally, respondents support sharing key information that federal interoperability policies don’t currently prioritize. For example, Pew researchers pointed out, more than two-thirds want their different doctors, hospitals, and other healthcare providers to share advanced care plans or end-of-life preferences, images, and family medical histories.
However, respondents expressed some concern with how certain information would be treated, such as any history of substance use, their behavioral health backgrounds, or details on social determinants of health such as income levels or access to food.
Indeed, the survey highlights differences in how Americans perceive the documentation and sharing of data on various social determinants of health. Although 75 percent of all adults say they would be comfortable providing their own doctor with this information, less than half, or 48 percent, wanted that information shared among their providers.
Respondents were additionally asked whether the federal government should be able to spend money on methods to better identify patients when they seek care, often a highly debated issue. With regards to patient matching—linking an individual’s records held in one facility to those in another—74 percent said they support the federal government setting national standards to more accurately match up a patient’s health records across multiple providers.
As Pew researchers stated, up to this point, the federal government has been less supportive of such spending. Although Congress required the creation of a unique patient identifier—which could address poor matching rates—lawmakers have consistently included language in appropriations bills blocking any spending on developing or finalizing standards for such an approach for more than two decades. The U.S. House of Representatives voted to remove that prohibition in July, but the U.S. Senate has not followed suit.
When asked about several possible methods for improving patient matching, about two-thirds of respondents said they would be comfortable using fingerprint scans or a unique code or number assigned to each patient.