Seema Verma Seema Verma (Photo: CMS)

The head of the Centers for Medicare and Medicaid Services says she has a personal stake in improving the state U.S. health records, because she knows what it’s like to have to struggle to get and understand a loved one’s records.

Seema Verma, President Donald Trump’s CMS administrator, talked about the need to make health record data standards stick Thursday in Washington, at the Health  Datapalooza conference.

She repeated a new version of a story she told at another health technology meeting in March: an account about what happened to her in the summer of 2017, when she was already  the CMS administrator, and her husband’s heart stopped while he was in the airport in Philadelphia.

(Related: Intel Executive: Let My Health Records Go)

Her husband’s doctors had questions for her about her husband’s medical history.

“Unfortunately, I had few answers,” Verma said, according to a written version of her remarks posted by CMS. “Eventually, due to the talent and tenacity of the medical team, they diagnosed him and saved his life.”

Once Verma’s husband was discharged, she asked for his medical records.

“The hospital eventually gave me a five-page discharge summary…and a CD-ROM,” Verma said. “That’s right. After spending $30 billion on making our health data interoperable, I left with a CD-ROM, which was, incidentally, incomplete. When I finally found a way to review the CD-ROM, I realized it didn’t even have his MRI and other tests results. And all of the data that the hospital collected on their monitoring machines was also missing.”

Patients need to be able to see the information that comes from MRI machines, heart monitors and blood sugar meters, Verma said.

“We need for these devices to share data and be interoperable just as much as we need doctors’ notes and medication lists to be interoperable,” Verma said.

Verma said she believes other patients have similar experiences every day, all over the country.

“We simply haven’t empowered patients to fully use and control the most important information to each and every one of us:  our health data,” Verma said.

Verma talked about several initiatives CMS has started, or is planning to start, that make it easier for patients to get and understand their medical records.

One is the Blue Button 2.0 project, a project to get many different entities that collect and administer Medicare enrollee health data to make the data available through what, to lay people, looks like a blue button.

“We are also asking if providers should be required to share health data with patients as a condition of participation in Medicare,” Verma said.

Verma said she is also calling on all insurers to follow Medicare’s lead and give patients claims data electronically.

She said CMS will also be adopting a new “Data Driven Patient Care” strategy.

One part of that strategy will be making Medicare Advantage patient data, Medicaid patient data and Children’s Health Insurance Program patient data available to researchers, Verma said.

— Read CMS Nominee Backs Patient Choice at Senate Hearing on ThinkAdvisor.

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