To Cure Cancer, Start with Data
The importance of the Vice President’s speech at Datapalooza and the work being done at TrialReach, by e-Patient Dave deBronkart
In May, the seventh annual Health Datapalooza conference in Washington brought together thousands of people from I.T., medicine, big business, and startups to talk about how information can change whether healthcare achieves its potential. I say “can change,” not “is changing,” because these problems are hard, and merely inventing something is not the same as change or value.
A key shift was apparent this year, a message heard far more than before: medicine must start thinking about its problems from the patient’s point of view. Nowhere was that clearer than in the address by Joe Biden, Vice President of the United States.
For the first time, this Datapalooza included dozens of patient voices. That’s important, because the culture of medicine (and industry) has always been to think from the professional’s point of view, and that culture is now officially obsolete.
I say that because in 2012 the Institute of Medicine (now Academy of Medicine), a body of 1200 accomplished physician leaders, pronounced in a 382 page report Best Care at Lower Cost that “the learning health system is anchored on patient needs and perspectives.” [emphasis added] And there’s no such thing as “anchor by proxy” — you need the affected person to be there in the room.
Biden’s speech showed this in spades. Listen:
When you have someone near and dear to you … somebody you love, someone dear to you, and they’re in trouble … you try to learn as much as you can. As rapidly as you can. In as much depth as you can … to see if you can help
Learn. Rapidly. In depth. Hear that? It’s the hunt for information. In my book Let Patients Help one of my key teachables is “We all perform better when we’re informed better.” Nobody — clinician or patient — can perform to the top of their potential if the information they need isn’t there. It showed up time after time in Biden’s story.
“Data liberación!”
Of course at Health Datapalooza, data and information are always in the spotlight. At the first one in 2011 Todd Park famously cried, with his boyish and boundless enthusiasm, “Data liberación!” He was announcing the release of hordes of health data from government databanks, for entrepreneurs to use in building companies, just as America gives away its weather data to companies like The Weather Channel. It’s a healthy process, a good use of taxpayer money, to gather data that would be prohibitively expensive for any one company to develop on its own, and use it to seed an ecosystem of firms that “pretty it up” to show the public.
But data alone isn’t the answer; for complex problems we need to extract the information from the data. That’s hard, and it’s what TrialReach strives to master. You might call it “información liberación.”
A major recurring problem in clinical trials is that connecting trials with eligible patients requires carefully extracting information from the piles of data that are required for regulations. Without that match, no trials happen and no results are published, and, in some cases, no lives are saved. (This is real to me at a gut level, because nine years ago my own life was saved from Stage IV kidney cancer, and one factor was the clinical trial I was in.)
TrialReach’s analytical engine strives to accelerate matching patients and trials by digesting the regulatory documents and turning them into questions an ordinary person can cope with. It’s especially important in cancer, where time may be tight and stress may be high.
Clarity is power.
Joe Biden talked about how progress is held back — care is held back — when information exists and isn’t where it’s needed. That shortfall impeded care in his son’s case, even though he had as much power as anyone in the world. Listen to his speech, and through his professional demeanor, you can hear the pain, and you can hear his determination that this shall change.
Clinical trials are a different part of the medical heavens but the fundamental shortfall is the same: when a trial exists that might serve a patient, and when a patient has a need but can’t find a trial, the whole process must necessarily fall short of what was possible.
Nobody can contribute, nobody can achieve, to the top of their potential if they don’t have information they need. Sometimes that information simply doesn’t exist — but when it does exist and can’t be found, or can’t be understood, I say that’s a tragedy.
This is the problem TrialReach strives to solve. The work is not easy, but it’s important. Clarity is power.
If you’d like to view Joe Biden’s full speech, check out the video below:
By “e-Patient Dave” deBronkart, an international keynote speaker, author, and health policy advisor who serves TrialReach as Special Advisor for Patient Perspectives
Originally published at blog.trialreach.com on June 3, 2016.
