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Like EHRs, clinical research data must be unchained for the greater good

We write a lot about interoperability of EHRs in SearchHealthIT’s stories and blogs because the topic is rife with obstacles for the healthcare industry to overcome. Yet the ability to share a patient’s electronic medical record across various hospitals and health systems improves clinical care.

But it’s not just EHR purveyors and users who aren’t sharing well. A story on the Beta Boston website described the journey of a woman living with a cancer-causing gene mutation who expressed surprise at the lack of give-and-take among clinical researchers.

The woman found a trove of information about her mutated gene on a National Institutes of Health website called ClinVar. The site collects reports of gene variants found in patient samples, determinations of their clinical significance, and other supporting data.

GeneThe Beta Boston article notes that if more clinical and commercial researchers contributed their cancer data to ClinVar, the healthcare industry would have a greater chance of predicting gene mutations and perhaps focusing early treatment options.

Hey, I understand the resistance. Clinical data is valuable. Just ask all the hackers who are after medical information. But that doesn’t warrant any single party keeping that information under digital lock and key.

From the EHR interoperability perspective, it’s refreshing to see initiatives like FreeOurHealthRecords.com moving forward. That website offers consumers the ability to request various electronic medical records from physicians and specialist and then have those documents reconstituted into a single, provider-agnostic EHR.

That movement is about taking control of EHR data away from the old-school stalwarts guarding the disk drives and servers in hospitals and medical practices.

Freer access to clinical research data is not many steps away from EHR interoperability, and unrestricted research files also support President Obama’s call to establish a national database for precision medicine work.

As society calls upon the healthcare industry for more progressive disease diagnoses, value-based care, and patient-centric approaches, unchained data must serve as a priority for all clinicians, researchers, universities, hospitals and biotech and pharmaceutical companies.

We should not treat data from medical studies as if it belongs in Fort Knox.

Scott Wallask is news director at SearchHealthIT. Follow him on Twitter @Scott_HighTech.

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