Eric Topol draws line in sand: Patients own their medical data

The renowned author and physician-scientist highlights the hurdles to sharing data with patients and asserts that giving patients their records could save lives.
By Jessica Davis
12:50 PM
Patients own their medical data

In a firm, bulleted-list, notable author and physician-scientist Eric Topol, MD, sparked a Twitter debate on his insights about the barriers to giving patients their medical record -- and why the shift needs to happen.

“Hospitals won’t or can’t share your data… Your doctor (more than 65 percent) won’t give you a copy of your office notes,” Topol tweeted. “Access or ‘control’ of your data is not enough.”


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The tweet has been shared about 775 times and liked by more than 1,200 users.

It also sparked further conversations that expanded on patient rights to own their medical data, which included moving beyond a patient-centered record.

“Hence, [it’s] important not to lose out and just be patient-centered,” tweeted Amir Hannan, MD, chair of Association of Greater Manchester Local Medical Committees. “[It] needs to be jointly managed and supported with coaching too.”

The debate of data ownership has been a hot-button topic for years. Topol, along with Katherine A. Mikk and Harry A. Sleeper of Mitre's Open Health Services, discussed how to shift medical data ownership to the patient in a Sept. 25 JAMA article.

To accomplish the shift, the authors laid out three essential steps: establish common data elements, provide patients with a ‘data receipt’ and manage ownership through data use agreement contracts.

In Aug., Epic Systems CEO Judy Faulkner asserted that the EHR giant fully supports patient access to their entire record -- something the company has supported for the last 10 years. But the barrier is with translating EHR medical terms into patient-friendly language.

As part of the 21st Century Cures Act, the language may require a patient’s EHR data to be transmitted in a way that would be easy to understand.

Twitter: @JessieFDavis
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