Patients willing to share research data

Two thirds are willing to give access, but draw the line at social media and financial info
By Mike Miliard
09:55 AM
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As debate swirls about a recent Institute of Medicine report suggesting that electronic health records collect more non-clinical patient data for population health research, a new poll suggest patients are mostly willing to offer access to anonymized health information – to an extent.

[See also: IOM wants more data logged in EHRs]

IOM wants standardized social and behavioral data to be logged in EHRs. Beyond the four pieces of such information already often collected (race/ethnicity, tobacco use, alcohol use and residential address), its report suggests also collecting patient data related to educational attainment, financial resource strain, stress, depression, physical activity, social isolation, intimate partner violence (for women of reproductive age), and neighborhood median household income.

That data would be a boon for researchers, according to IOM, offering "a coherent panel that will provide valuable information on which to base problem identification, clinical diagnoses, treatment, outcomes assessment and population health measurement."

[See also: Patients may battle over data rights]

Toward that end, the group has suggested that ONC and CMS "include in the certification and meaningful use regulations" addition of standard measures for those eight social and behavioral domains."

Predictably, many aren't happy about this prospect – especially physicians who already look askance at EHRs, complaining that they're disruptive to workflow and distract from good care delivery.

As one commenter wrote on Healthcare IT News: "Too many prescriptive requirements already. If a EP wants them let them get the extra data, but we do NOT want more required data fields."

"Shouldn't the #EHR work well first?" wrote, one physician, @DavidMayMD, on Twitter. "More data wont help!"

Beyond the question of whether more data collection is encouraged or even mandated, and regardless of what physicians and EHR developers might think of any new certification criteria, the more pertinent concern is whether patients will be willing to divulge or allow access to such data in the first place – especially when it comes to sensitive topics such as their financial status or emotional state.

A poll released this past week from Truven Health Analytics and NPR shows that more than two-thirds, or 68 percent, of Americans are willing to share their health information with researchers.

But there are limits to that openness. Just 22 percent of patients are willing to share their purchase history or social media activity with healthcare professionals, according to the survey.

When it comes to EHRs, 74 percent of respondents say they have a doc who uses one – including 90 percent of patients aged 65 or older, and 60 percent of millennials.

But despite their familiarity with EHRs, and willingness to allow anonymous health data to be accessed by researchers, less than a quarter of patients would let their own physician or health plan access to their credit card purchases or social media information – even if it might improve their overall health, according to the poll.

Sixteen percent of respondents said they have worries about sharing their health records with their health insurer, followed by hospitals (14 percent), physicians (11 percent), and employers (10 percent).

More than half of patients (56 percent) have reviewed the information kept by their physician, the survey shows; just 5 percent said they've been informed their medical records were accessed without their permission.

"An overwhelming number of patients have had experiences with (EHRs), which seems to point towards a concerted effort among healthcare providers to share information as a means to faster, more accurate care," said Michael Taylor, MD, chief medical officer at Truven Health Analytics, in a press statement.

"While privacy concerns have been an issue in the past, as (EHRs) continue to become more prevalent, it appears that Americans are becoming increasingly comfortable sharing this type of information with employers, providers and health plans."