What if patients owned their own records?

January 25, 2018

With electronic health records (EHRs) proving to be incompatible and interoperability still a long way off, some have suggested that moving ownership of patient records to the patient via a cloud-based portal or other universally accessible system might be the answer.

With electronic health records (EHRs) proving to be incompatible and interoperability still a long way off, some have suggested that moving ownership of patient records to the patient via a cloud-based portal or other universally accessible system might be the answer. 

Munzoor Shaikh, MBA, director of West Monroe Partners, a business and technology consultancy in Chicago, Illinois, says the most realistic scenario for a cloud-based portal would start with Centers for Medicare & Medicaid Services’ data becoming a central repository, to which large regional systems like Kaiser and Northwell would add their data. Individual patients would own their specific data in this repository, almost in a subscriber model, essentially “paying” by sharing their data and allowing large-scale research including that information to be done in return.

 

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Omar Baker, MD, copresident and chief quality and safety officer at Riverside Medical Group in New Jersey, recently spoke about this topic at a panel discussion on Health Information Technology for Economic and Clinical Health held in Somerset, New Jersey.

“Medical records in the custody of healthcare providers, such as a physician or hospital, represent the business records of the practice or organization,” he says. “However, the underlying question is: Should physicians be the ultimate owner of these records or should their role simply be more custodial?”

Baker says that patients owning their own data in the cloud would constitute true interoperability and integration and would decrease fragmentation and duplication of care.

Next: Is it feasible for patients?

 

Is it feasible for patients?

Still, Shaikh adds, while in theory patients owning their own records is a great idea, it’s probably unrealistic.

“One of the reasons patients won’t own their records is the data inside them-he who owns the data has the power,” he says. “And through EHRs, vendors and providers already have access to tremendous amounts of data. I don’t see them giving that up.” 

 

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Shaikh says patients already own a portion of their personal data, such as the microdata generated by wearable devices. Apple, for instance, has apps on its iPhones that hold MRI scans and EKG files for patients, and since the patient owns the device, he or she would own the data on it too. “The more disruptive technology advances into personal hardware like this, the more health data we will own ourselves,” he says.

Baker says it is imperative for regulators and legislators to create a clear framework for patient record ownership as technology advances. “Ultimately, providing patients and physicians control over the medical records is a balancing act that requires communication and cooperation between patients, providers and medical record management vendors,” he says.