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Datapalooza Day 2 Report: Health Data Liberation Remains a Political Struggle

May 10, 2016
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An underlying tension at the Health Datapalooza Conference is that many of the people attending are activists and patient advocates who argue that individuals should have control over how their health data is used and that providers have a moral imperative to make it easier for them to access that data and designate how they would like it used for research, while others at the conference represent health plans or other groups making money from offering access to proprietary data sets.

From the winner of the Health Data Liberator award to the presentation by Christine Bechtel of the “GetMyHealthData” campaign, the message is that healthcare providers are not moving fast enough to change their cultures, despite their attestations in Meaningful Use to share data with patients.

This tension isn’t only related to the fact that the healthcare culture is slow to get more responsive IT systems so they can give people data in a useful form, and not on CD-ROMs. It also involves a fundamentally different worldview about the proprietary nature of health data, how it is bought and sold, and whether even public entities such as state Medicaid agencies should continue to refuse to open up their data sets to outside researchers.

Last year at the Health Datapalooza, the “GetMyHealthData” initiative was launched with the idea that a concerted effort to enlist people to ask for their health data would unlock consumer demand. The first-year report back to the conference was ominous. “We thought if we pulled on the rope, it would unravel the knots in the system,” said Christine Bechtel, coordinator of GetMyHealthData. They asked people to fire the first round of “tracers” and report back on what happened to them. Speaking at this year’s Datapalooza, she said, “What we found was that when we pulled, there was an elephant sitting on the other end of the rope.” People got messages that they could have their data if they asked correctly or letters asking why they wanted it. Not a single healthcare organization was able to send data to a health app at a patient’s request. People reported getting PDF files on CD-ROMs. “We saw them being charged high fees that stood in the way of data access,” Bechtel said. Some were charged up to $600, with no estimate upfront about how much it would cost. Some providers were even charging for access to patient portals that were subsidized by taxpayer dollars through the Meaningful Use program. She did acknowledge that the HHS Office for Civil Rights recently issued clarifications on guidance about what is acceptable and legal in this regard.

Aneesh Chopra, president of NaviHealth, who previously served as the first chief technology officer of the United States, joined Bechtel on stage. He said that although she painted a gloomy picture of the current state of affairs, at least communications are starting to happen in which records management staff are talking to the CIO about these issues. Awareness is being raised. He called for healthcare organizations to become “Data Exemplars” and examine their own practices in this regard and work to improve them and publicize their efforts.

Back to the political aspect: The winner of the Fourth Annual  Health Data Liberator Award is a “hacktivist” named Fred Trotter. Former U.S. Chief Technology Officer Todd Park presented the award. Trotter is a founder of data journalism group DocGraph Journal and CareSet Systems, a startup offering network and referral optimization. He also co-wrote the first Health IT O’Reilly book “Hacking Healthcare.”

In his remarks in accepting the award, Trotter said there were two camps when it came to patient data, one that saw it as a natural resource like coal to be mined and horded to make the most money possible from it, while the other side sees it as like water or air. “We all own it and should have access to it. It should be protected and shared safely so people can do the best science on it,” he said. One side wants to profit on the front side by creating silos of data, while the other wants to see profit on the back end by those who create valuable contributions from access to open data. He said the decisions we make now about how we think about control of data and artificial intelligence would have profound impacts for generations to come.

Last year Bray Patrick-Lake, who is director of stakeholder engagement for the Clinical Trial Transformation Initiative at Duke University and a co-chair of the working group designing the Precision Medicine Initiative at NIH, posted on Twitter a photo of her pile of paper records and disks with the title: “Here’s my worthless longitudinal health record. Patients need interoperable EHRs today.” She was asked at a panel session here if she had one wish granted, what would it be. “Send one person from an EHR vendor to jail for info blocking,” she said.

Speaking during another panel session, John Wilbanks, chief commons officer at Sage Bionetworks, said patient data rights regarding research and consent have to be designed into the architecture of health IT rather than an afterthought. “If we don’t demand certain baseline patient data rights, they will be designed out of systems,” he said.