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Arundhati Parmar of MedCity News interviews Greg Simon of Biden Cancer Initiative at MedCity CONVERGE 2017 in Philadelphia
For years tensions have simmered between electronic medical record vendors, patients and providers on the topics of interoperability and patients’ access to their medical records. And yet, it’s rare to hear the classic exchange — why do you want access to your entire electronic medical record (as opposed to a shorter summary) and the response — none of your business, uttered by such high profile types as Epic Systems CEO Judy Faulkner and Former Vice President Joe Biden. Such was the colorful anecdote Biden Cancer Initiative President Greg Simon brought to MedCity’s CONVERGE conference this week.
Although this was a particularly interesting part of the fireside chat between Simon and MedCity News Editor Arundhati Parmar and highlighted in Politico, it was far from the only one. (You can view the entire conversation on Periscope)
The discussion touched on changing the culture of science, thinking of health as an asset instead of a cost, and putting the Cancer Moonshot into perspective by drawing attention to some of the collaborations it has spurred such as an “atlas” for liquid biopsies.
On the subject of HIPAA, Simon called attention to the differing priorities of the legal community and consumer advocacy groups compared with the patient community.
“I have yet to find any patient group whose main concern is ‘please protect my privacy,'” Simon observed.
On changing the culture of science to make information more easily accessible
“We should be sharing information at a much greater rate to promote knowledge. Why shouldn’t a doctor in Mobile, Alabama who is seeing a rare cancer for the first time not know how that tumor is treated by a doctor at Memorial Sloane-Kettering who has seen that kind of tumor 100 times? You could say they should read JAMA or New England Journal of Medicine but a lot of doctors don’t.”
The emotional difference of treating health as an asset rather than a cost
One of the interesting points Simon made was the emotional baggage that tends be associated with viewing healthcare as a cost leading people to resent what they are shelling out rather than as an asset we invest in.
“Why don’t we have a futures market in health? Or an insurance company could hedge their liability to pay for a new drug by entering into a contract with speculators about what the price will be next year to treat cancer.”
He believes there’s room for companies to bring financial innovations to healthcare help bring new companies and drugs to market and keep their prices rational. It sounds like a neat idea but there’s the risk that inevitably there would be those who would learn to game the system
Collaboration
Simon offered up a couple of examples of the collaborations the Cancer Moonshot which Biden Cancer Initiative sprung from was formed from.
“Everything we did in the Moonshot… we were reflecting what people were doing in the world. We received ideas and helped people grow them.”
An interest in making use of available resources data and harnessing it to improve sequencing tumors for veterans because different labs used different methods. It led the Veterans Administration to collaborate on a couple of fronts. It worked with Walter Reed National Military Medical Center to do biopsies and sequencing of tumors to improve cancer diagnosis and treatment. IBM Watson Health also got involved to provide its machine learning tools to search for the best therapies for cancer patients based on their genome sequences.
Simon also drew attention to Blood Profiling Atlas for Cancer or BloodPAC, which is led by Lauren Leiman. The group was launched last year after the discovery of blood samples taken by numerous military personnel for HIV testing over the course of 25 years. The goal is to develop and validate liquid biopsy assays to improve outcomes for cancer patients. The research consortium includes the academic world, private foundations, industry, and the government.
Photo: Justin Lawrence