Data access barriers are everywhere, says patient, PhD candidate

Barriers to health data access are everywhere, said Steven Keating, PhD candidate, who made headlines earlier this year when his research on his own brain tumor led to the realization the tumor had grown and he needed an operation. Keating spoke at the ONC's fifth annual Consumer Health IT Summit on Oct. 1.

Keating had volunteered to submit his health data to researchers but he soon realized he had the least access to that data. Even if barriers to data are low, "they're mountains to patients." And, there are no easy tools for patients to interact with their data. Keating said he still doesn't have access to his genome sequence data even though researchers do. "Why can they see my future but I can't?"

Healthcare providers need to enable patients as partners, he said. "We need access, patient centricity and clarity. It's our time to speak up for this. The first step is access. I’m pushing for open API. The possibililities are incredible."

Data also generates support, said Keating, a point most researchers don’t realize. "Support can be the most important medicine." When he was sharing his data with his family, they were sharing back. That sharing enables the generation of support.