Thursday, the White House is convening a summit to mark the first anniversary of the Precision Medicine Initiative.
Among the invitation-only guests is Noga Leviner, the CEO of a startup vendor of untethered personal health records, San Francisco-based PicnicHealth. Yes, the Obama administration has hand-selected a small company in a health IT sector that has seen pretty much nothing but failure for more that two decades.
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Leviner, who will give a short talk about the company, her personal experiences with Crohn’s disease and the importance of data availability in personalized medicine, knows this history. After all, she has tried some of the PHRs that have come and gone.
“My hypothesis is that none of the products were actually good,” Leviner said by phone upon her arrival in Washington. “Nobody actually solved the problem.”
That’s why, when she co-founded PicnicHealth in 2014, Leviner decided to offer data-aggregation services, not just provide an electronic folder that leaves patients essentially on their own to collect their own health records and test results.
“When you’re a patient, you have this expectation that there will be a doctor who is in charge and keeps all the other doctors in the loop,” Leviner said. Clearly, that’s not often the case in the real world of healthcare, where the role usually falls to patients and/or their loved ones, who don’t
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“It was hard to get my record. It was like being a project manager, in addition to being sick and having regular job,” Leviner said. “Paper was not set up to be amenable for patients.”
After a patient requests data, PicnicHealth handles the work of collecting records, medical images, test results and other pertinent documents. Then the company takes the extra step of digitizing paper records into machine-readable data, not just PDFs.
And unlike, say, Google Health, PicnicHealth is focusing on patients — like Leviner herself — with chronic conditions who see many healthcare providers.
Precision medicine came into the picture because PicnicHealth kept getting requests from researchers and genomics companies for genomic data on patients who had consented to share their records. Now, some vendors are paying the PHR subscription fee for patients, Leviner said.
“There aren’t good ways for researchers to get access to patient data and there aren’t good ways for patients to donate their records to research,” Leviner added. Precision medicine “fits really, really well with our overall vision.”
Others participating at the White House summit include Validic CTO Drew Schiller, Stanford Medicine X Executive Director Dr. Larry Chu, patient advocate Hugo Campos, OpenAPS founder Dana Lewis and Intermountain Precision Genomics Executive Director Dr. Lincoln Nadauld.
Vice President Joe Biden, who is leading the Precision Medicine Initiative, will be in Salt Lake City Friday to meet with Intermountain Healthcare executives about precision medicine.
Photos: PicnicHealth, Wikimedia Commons
