Policy, Patient Engagement

Precision medicine ‘Champions of Change’ caught by surprise

Amy Gleason, one of nine “Champions of Change” for precision medicine, wants to tell President Obama that consumers are as important as geneticists in making the Precision Medicine Initiative successful.

Amy Gleason, co-founder and COO of personal health records vendor CareSync, is on her way to Washington on Tuesday in preparation for a Wednesday event at the White House, where she will be one of nine people honored as precision medicine “Champions of Change.”

When the week began, Gleason did not even know she would be making the trip. “I’m thrilled and surprised,” Gleason told MedCity News by phone from Atlanta’s Hartsfield-Jackson International Airport.

About all Gleason knows is that she will be on a panel at about 2 p.m. EDT Wednesday with fellow “champions” Hugo Campos and Howard Look, and that new Health and Human Services CTO Susannah Fox will moderate the discussion.

Gleason said that she wants to tell President Obama and others leading the Precision Medicine Initiative — something Obama introduced during his State of the Union address in January — that consumers are as important as geneticists in making the effort successful.

“I think precision medicine is dependent on patients having access and control of their data,” Gleason said. “And the data has to be standardized so it can be aggregated and made meaningful.”

Gleason, a registered nurse, approaches this as the mother of a daughter with juvenile myositis, a rare autoimmune disease that affects just 3,000 to 5,000 children in the U.S. She also said that her mother had a rare mutation of lung cancer.

Following her daughter’s diagnosis, Gleason co-founded Wesley Chapel, Fla.-based CareSync with Travis Bond, who previously started Bond Technologies, an electronic health records vendor that he sold in 2008 to a company that is now part of Allscripts Healthcare Solutions.

While Champions of Change is largely a political tool for the Obama administration to advance some of its pet projects, including the Affordable Care Act, Gleason sees the precision medicine panel as an opportunity to show off some of the work she and the others have done. “They’re trying to highlight some people who are making a difference, even without formal direction” to this point, she said.