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Ownership of data is a heated debate

By law, patients own their own data, but access and understanding what's in the record are not user friendly.

Susan Morse, Senior Editor

Dr. Andrew Gettinger, chief clinical officer for the ONC, spoke about patient data and the future of interoperability during Connected Health.Dr. Andrew Gettinger, chief clinical officer for the ONC, spoke about patient data and the future of interoperability during Connected Health.

Healthcare data is owned by the patient, but providers, payers, pharma and others know far more about how the information is being shared than the consumer.

By law, patients own their data, said Dr. Andrew Gettinger, chief clinical officer for the Office of the National Coordinator for Health Information, during the Connected Health Conference in Boston last week.

But if possession is nine-tenths of the law, then who controls that data becomes the issue that was debated by panelist experts during another CHC session.

"Patients do have a right to their data, but it's hard getting it," said Deven McGraw, chief regulatory office for Citizen Corporation, during Health Data Monetization and the Data Economy. "It's about dominion and possession."

Data is monetized and sold. Data brokers legally buy and sell de-identified health information, to other data brokers and companies.

"The general public isn't aware of this, that they're data is being sold," said Grace Cordovano, founder and board-certified patient advocate for Enlightening Results.

The ownership of data is a heated debate, Cordovano said.

There should be a buyer beware type of label for consumers, she indicated. "Why don't we create a label, hey data is sold here?" Cordovano said.

All agreed patients need better access, and should be aware of how their information is being used.

HIPAA protects patient privacy, but within the walls of healthcare, data sharing is necessary for claims, analytics and better outcomes.

"At the end of the day, the data needs to move through the healthcare system," said Christopher Sealey, co-founder and president of CoverUS.

And it does save lives, he said.

"Here, data is the new oil," Sealey said. "Agency is key."

Moderator John Sharp, director, Thought Advisory, Personal Connected Health Alliance, HIMSS, spoke hypothetically of a pharma company that offers to give patients drugs at a discount to have access to their health data for studies.

Data privacy and sharing is an ongoing issue, with the ONC talking about taking mega data and making it into actionable data, the way law enforcement does using GIS dashboards, Gettinger said during his keynote.

As interoperability becomes the gold standard, and as FHIR USCDI - the Draft U.S. Core Data for Interoperability, and other tech make it more of a reality - getting patients engaged in their care is essential, Gettinger said.

"We have struggled to get patients to spend time in their records," he said.
"We need to think deeply about some of what is recorded in electronic health records. We need to think about the language used."

Language in the clinical record is not friendly for consumers, he said.

Currently, New Hampshire is the only state to define the EHR as owned by the patient.

The patient is best positioned to identify errors in the record, said Gettinger, who tested this by asking to see his own EHR. In it were numerous errors, he said, including surgery to implant a vaginal mesh. This and other misinformation was traced to cut and paste errors.

"The medical record is a legal document that substantiates the care I've provided," Gettinger said. "This is a working space for providers. It is not a place that connects patients to their care team. Information in the medical record is difficult for patients to interpret."

Twitter: @SusanJMorse
Email the writer: susan.morse@himssmedia.com