Americans want greater access to their medical records and support sharing their health information among all their healthcare providers.
By a 61% majority, the Pew Charitable Trusts found people want to be able to access and download their medical records to apps on mobile devices. An even larger 81% of the respondents to the Pew survey support sharing medical records among healthcare professionals caring for the same patient.
Though there’s broad support for accessing and sharing medical records, the survey found nine out of 10 respondents are concerned about the privacy aspects. Three-quarters would be comfortable if the app they use was approved by the healthcare providers. With other apps, the comfort level drops off substantially.
The other privacy concern centers around just what information in patient records would be shared.
“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,” said Pew’s report on the survey findings.
75% of the survey participants felt comfortable giving their personal doctor this information, but a less than majority 48% want it shared with others. Based on focus groups conducted previously, Pew said the concern is being pre-judged based on social determinants.
“Participants had questions and concerns, including that this information would lead to assumptions about patients and could contribute to discrimination,” Pew said in an previous article discussing the focus groups. “Many participants said they would feel comfortable discussing (social determinants of health) with clinicians with whom they had an established relationship, but they had concerns about that information being shared with a different provider.”
One of the challenges to sharing electronic medical records among providers is patient matching – accurately linking a patient’s information in one facility to their records elsewhere. Three-quarters of the survey participants supported having the federal government set a national standard to identify patients across multiple providers. Years ago, Congress authorized the creation of a unique patient identifier, but has so far failed to allocate the money to get the job done. Pew found widespread bipartisan support for spending on to set up the system. Fingerprint scans and a unique code were the most popular identifiers. Just over a majority supported eye or facial scans or an app.
“This survey,” writes Ben Moscovitch who directs Pew’s health information technology initiative, “Shows that Americans recognize the importance of getting their own health data and sharing it with the clinicians that care for them.”