I just returned from HL7’s Partners in Interoperability conference in Washington, DC, where there were substantive discussions on the state of interoperability in healthcare, and ways we can make progress towards interoperability that truly works for clinicians and patients. One speaker that stood out was Greg Barnowsky of Pennsylvania-based Independence Blue Cross who has made terrific use of the FHIR (Fast Healthcare Interoperable Resources) standard to create cost-effective connections to multiple apps in support of their patients. One of Greg’s quotes hit home for me:

“You don’t win by holding on to data, you win by how you use the data in ways that support patient health.”

I believe we are seeing progress in healthcare institutions adopting this perspective, but we still have a long way to go. There are 5 factors that I believe are holding data back, which I admit, may be controversial:

  1. Lack of a compelling reason to share dataWhile value based care models will impact the importance of sharing clinical information, the place that cares for a patient has little priority to ensure that that information gets to a follow-on care provider, particularly one that is outside of their health system. The need to reduce re-admissions has helped this situation and naturally promotes better sharing of information with downstream providers, but a lot of this is being addressed by the growth in consolidation and health systems owning those downstream providers – making data sharing easier once they all share the same system. Once most of  an institution’s patients are “in-system”, I believe there will be further challenges to sharing data with outside providers.
  2. Limited value of the data that is sharedWhen sharing is occurring, it is largely with the data required by Meaningful Use – specifically a clinical care summary, which includes allergies, problem lists, and medications. While this is valuable clinical data that can help avoid adverse events, it is not the complete picture clinical specialists need, like the details of a pathology report.
  3. Too many standards and approaches leading to confusionWe have Health Information Exchanges that are largely capturing and sharing HL7 data, Direct-based secure messaging, Integrating the Healthcare Enterprise (IHE) sharing of Consolidated Clinical Document Architecture (CCDA) documents via XDS, Epic CareEverywhere, Sequoia Project Carequality and eHealth Exchange, CommonWell Health Alliance, and now, to quote an individual that spoke at the Interoperability conference, the “last best hope for interoperability – FHIR”. What should a health system implement? Your guess is as good as mine.
  4. Higher priorities to get Meaningful Use and institutions’ own EMRs implemented successfullyThere is no question that deploying an EMR is a hugely disruptive and complicated process. And once an EMR is deployed, now it must be further tailored to meet all the needs of the institution and also ensure all the measures of Meaningful Use are implemented. There is no question the focus of CIOs is still on their own EMR “navel”, and not thinking about how to share the data they are collecting in their EMR with others.
  5. No clear owner of ensuring data sharingUltimately, I think this is the core of the matter. Who is responsible to ensure data is shared? While I believe that it should be the provider who is the originator of the data, there are all the reasons above why this data sharing is not happening. Should it be government regulation? To some extent, this is a good way to drive behavior, particularly with the approach that Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) is taking in the rules just published by HHS to drive use of open APIs and information exchange. Ultimately, I think healthcare moving more to value based reimbursement and patients demanding access to their full record will drive the right behavior, but it will take time – probably five to ten years, to really set in.

After seeing these constraints on data sharing, you might come to think I am pessimistic about our future, but I am the opposite. I see promising signs that the perception of data sharing is changing, and more people are coming together, like at the conference I just attended, to address these constraints and come up with ways where data sharing becomes more ubiquitous simply because that is the right way to reduce waste and improve patient care.

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