Patients willing to participate in data sharing, precision medicine

Nearly one-quarter of patients would opt into data sharing for all of their information with any interested precision medicine research party.

By Sara Heath, Patient Engagement HIT

Patients approve of data sharing and are willing to contribute their medical information to research projects, but according to a group of researchers from the University of California San Diego, there may be some strings attached.

These findings come in the context of the precision medicine and All of Us campaigns, which call for the use of patient data repositories to create targeted treatment approaches to improve care quality. Precision medicine efforts rely on patients being will to share data with medical researchers.

“The finding in this study that most patients were willing to share data from their EHRs and biospecimens with researchers is reassuring,” the researchers wrote. “Not only can biomedical research benefit from these resources but also a multisite learning health care system can continuously advance as a result of data-driven improvements to processes and associated outcomes.”

Overall, patients are willing to participate in precision medicine, but there are some caveats, the UCSD researchers reported in JAMA Open Network. A survey of over 1,200 patients revealed that most are willing to share at least some of their medical information with some interested research groups. Read more …