Biden Cancer Initiative President: Achieving Interoperability Through Brute Force

“The culture of science suffers from a lack of self-reflection. You learn at the bench of somebody who learned at the bench of somebody who learned at the bench of somebody…” said Greg Simon, President of the Biden Cancer Initiative. The Initiative began as the Cancer Moonshot, and spun out on its own as a nonprofit this summer.

He says the approach science, and government-funded science, take towards problem-solving isn’t necessarily wrong, but it is dated.

“What we should be having is a ubiquitous immediate network for the sharing of data,” he said, speaking at the MedCity CONVERGE meeting in Philadelphia. He believes that medical science spends too much time on the old annual conference model of presentation. In an era where all breakthroughs can be shared instantaneously via the internet. “What we should be doing is sharing it at an immensely greater rate so we can have much more of a focus on knowledge. Why should a doctor in Mobile, Alabama, who is seeing a rare type of cancer for the first time, not know exactly how that’s treated by doctors at Memorial Sloan Kettering who have seen it 100 times?”

Simon asserts that doctors around the country don’t necessarily have time to read all the major medical journals in which findings are published.

The culture of government science, he said, is essentially unchanged since its initial push following World War II. “The way we fund it, the way we share it, who we fund, and what we fund has not drastically changed in 60 years,” he said, later following that the National Institute of Health is roughly on par with second-tier research university.

Simon also had harsh words for the lack of interoperability across healthcare as a whole.

“Do not confuse consumer groups with patient groups…I have yet to find a patient group where HIPAA was their biggest concern,” he said, believing patients would be more willing to allow their data to be used for better research were it an option. Some of the problem there he put on EMR companies.

“Electronic Medical Records are only valuable to me to the extent that I can get them out of my doctor’s office. That’s really hard, and it shouldn’t be, and people die from that. EMR companies are a billing system, yet we rely on them to track doctor’s visits, treatments, and outcomes. They’ve never been designed to be patient-friendly, interactive with other systems, and shared,” he said.

He referred to a meeting he and his boss, former Vice President Joe Biden, had had with hospitals and EMR companies just before the last administration left the White House. The head of an EMR company he said he would not name (and then did so with a wink) asked Biden why he would want his medical records, given that he probably wouldn’t understand much of them.

“Biden said ‘None of your business, if I want to nail them to the walls in my kitchen that’s my business…I don’t need to understand all 1,000 pages, I want my records and I will find someone who will explain them to me…’ and it went downhill from there.”

In advance of the meeting, he says, they were told not to bring up the topic of interoperability when working with EMR companies.

“Well, that didn’t fly with the boss. Here’s why: interoperability is a technical, solvable problem if you want to solve it…if your business practice relies on you not being interoperable, you won’t be.”

His solution to such resistance? “Brute force.”

“When I say brute force I mean our credit system, our finance system, our communications systems have all adopted standards in record time to make things happen and take control away from the owners of the technology to create open, dynamic systems. That’s true in every aspect of your life is except the most important one: your health,” he said.

“What we need to do is say ‘this is the timeframe and you can do it on your own, or we will bring in other people to make it happen.’ Silicon Valley is dying to run away with standards for electronic medical record technologies and have nothing to do with Cerner, Epic, AllScripts, etc.”