Trump administration promotes patient ownership of health data

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CMS announces a commitment to give patients control of their records.

In a move to put patients in control of their medical records as well as promote interoperability, the Trump administration has rolled out its MyHealthEData initiative.

“The time is now to align every facet of the federal government and private sector to share information,” said Jared Kushner, innovations director for the White House, at the Healthcare Information and Management Systems Society (HIMSS) Annual Conference in Las Vegas on March 6. “Interoperability is about saving lives. Up to 400,000 people die each year because doctors don’t have access to their complete medical histories.”

Kushner added that interoperability will unleash data that will drive innovation.


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Seema Verma, director of the Centers for Medicare & Medicaid Services (CMS), reaffirmed the administration’s commitment to value-based care while promising an overhaul to the Meaningful Use program for EHRs and an overall updating of the agency’s guidelines to better align it with a digital world.

“It’s amazing how seldom the patient is mentioned in discussions on value-based care,” said Verma. “We will not achieve the goals of value-based care until we allow patients to make their own decisions based on quality and value, and until we do that, healthcare will continue to grow at an unsustainable rate.”

Verma said that Americans want more accountability for healthcare, and want their doctors spending more time with them and less time on the computer. As a result, she said that CMS has adopted a patients-over-paperwork approach.

While tremendous progress has been made in doctors adopting EHRs, it is rare that the data is shared across health systems or providers, leading to patient frustration and physician inefficiency.


“Currently, there is a financial interest for the EHR systems to hang onto the data for their patients,” said Verma. When that happens, tests are repeated and healthcare dollars are wasted. “Fax machines are still the go-to device for healthcare information,” she added. “The EHR still doesn’t do the job of making patient records easily available.”

Next: Giving patients data ownership


Giving patients data ownership

She said value-based care cannot work unless all the patient information is available to both patients and providers so they can make a mutual decision about care.

The MyHealthEData initiative is intended to put patients in control of their data and making them the center of the healthcare system while maintain privacy. This will be accomplished, according to CMS, by breaking down barriers that prevent patients from having electronic access to their own health data and give them control through the device of their choice. Furthermore, when patients connect with their preferred physician, they can give them secure access to the data.

“Data will drive innovation and improve treatment costs,” said Verma. “Once the information is freely flowing, value-based, patient-centric care will be better than anything we have today.”


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CMS aims to have interoperability not just in EHRs, but “the entire digital health ecosystem.”

Verma made a point of emphasis that data blocking or limiting patient records in anyway would not be tolerated. She also said that documentation and management codes used for Medicare patients would be updated and streamlined so doctors could spend less time with their EHRs and more time with patients

She also called on private payers to give patients access to all their claims data electronically.

“We are serious about putting patients first, giving them control of their records,” she said, a comment that the audience applauded, adding that the agency would also be reviewing quality measure to align them with putting patients first.