Epic’s Struggle Highlights Issues In Sharing Patient Information Datasets

In recent times, Epic has expanded its vision from being merely an EHR vendor to offering access to a gigantic patient health dataset culled from a broad range of providers. However, getting there is proving to be tougher than the company expected.

According to John Moore of Chilmark Research, who attended Epic’s 2018 UGM conference, CEO Judy Faulkner spoke there of building “One Virtual System Worldwide.” This virtual system, Faulkner told attendees, will help researchers generate clinical science breakthroughs drawing on the de-identified data of all of Epic’s clients.

One core element of Epic’s emerging virtual system is the Cosmos platform, a hosted data warehouse built on the Caboodle stack, which comes with a hosted version of its Slicer-Dicer analytics tools. Epic’s broader enterprise analytics and population health offering includes its Cogito Analytics Suite, AI and machine learning capabilities and its Healthy Planet population health platform.

In theory, the virtual system could embrace all of the 200 million records managed by Epic clients, and as long as the data was properly de-identified, the data could be shared freely with appropriate parties.

In reality, though, Epic has been finding that it’s harder than it looks to pull together multi-party patient datasets. As this time of last year, when Moore blogged about the UGM event, Epic was having trouble getting its customers to participate in its data-gathering efforts.

This points to one of the seldom-mentioned but critical problems in creating such health datasets, which is that for most potential participants, it’s much easier to visualize how the great benefits such data sharing could be than actually making it happen.

After all, most provider organizations – especially academic medical centers with research programs – would love to have better access to patient data, as it helps to support their research programs.

Meanwhile, few are particularly eager to share their data, even if that gives them greater access to other patient health datasets. When it comes to such data, providers have every reason to be cautious about sharing it, as it raises a myriad of commercial and regulatory concerns.

What’s more, it doesn’t seem likely that Epic would find it easy to create a commercial marketplace, either, if a recent poll backed by health IT site HISTalk.com is any indication.

When asked what rules health IT vendors should follow when reselling the de-identified data of patients treated by their provider clients, one-third of respondents said that they should never do it in the first place.

Just over 33%  said the vendors should get explicit, case-by-case permission from patients before such data sales, 21% said the vendor, client or data buyer should compensate the patient, 9% said the data buyer or vendor should be compensated, and 7% said vendors should ask for the provider’s explicit, case-by-case permission before going ahead with such sales. (Respondents were allowed to choose more than one option.)

For what it’s worth, Epic seems to have gotten further with its plans since Moore’s report from last year, as it has apparently begun allowing sites to opt into Cosmos at no cost. To participate, these sites collect a HIPAA-defined limited data set, which is then made available for use in research to all parties which participate. This seems like a smart move.

Still, this tale reminds us that there’s still no easy path to sharing patient datasets between providers, even with a powerful intermediary like Epic laying down tracks between participants. It may be a while before these hurdles get any lower.


About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.