One of the most powerful lessons I learned when I was a medical resident leading a ward team was the incredible clarifying power of focusing on the patient. I found it profoundly moving how many turf battles and care debates could be resolved almost magically by aligning everyone around the basic question, “What’s in the best interest of the patient in front of us?”
Unfortunately, as scope expands from ward to hospital to health system to healthcare, the challenges of alignment get progressively more difficult. The number of stakeholders increases, along with the complexity of interests. One result is the siloing of health information–along with the equally common stakeholder assertion, “I’d love to help, if only I could, but it’s really due to a problem somewhere else in the system.” (Or, as a John Malkovich character might say, “It’s beyond my control.”)
Which is why the decision of Ambry Genetics to share data publicly, as reported in today’s New York Times, represents such a welcome departure from what’s become a depressingly familiar routine.
(Reminder/disclosure: I am Chief Medical Officer of DNAnexus, a health data management company; I/we do not have a financial relationship with Ambry.)
According to the Times,
In an unusual move, a leading genetic testing company [Ambry Genetics] is putting genetic information from the people it has tested into the public domain, a move the company says could make a large trove of data available to researchers looking for genes linked to various diseases.
While you might dismiss this as a publicity stunt, I was struck by the comments of the company’s founder and CEO, Charles Dunlop, who has been diagnosed with advanced prostate cancer, according to Times, and is keen to share rather than hoard or sell Ambry’s data because, in his words, “I don’t want to wait an extra day.”
Dunlop’s sentiments mirror those of thousands of patients, who receive a diagnosis, start talking with experts, and then are first struck and then appalled by the miserable quality of data sharing–it’s just the frustration that led Andy Grove to push for more rapid knowledge turns in medical research, and Josh Sommer (one of the Forbes “30 Under 30” awardees in 2014) to start the Chordoma Foundation in hopes of bringing together scientific information to accelerate cures.
The challenges of data sharing are also, presumably, why patient ownership of and access to their own data is such a foundational provision of the Precision Medicine Initiative–because it seems increasingly clear that you can’t count on most doctors, researchers, hospitals or health systems to share health data at the deep, rich level that would truly accelerate the pace of learning and the delivery of more effective treatments, though of course there are important exceptions. (I use “deep” to distinguish meaningful data sharing from the many pro forma consortia or collaborations that seem more adept at generating publicity than knowledge, and produce far more heat than light.)
Hopefully, the increasing emphasis on data sharing will filter down from executives proposing ambitious policy–leaders such as President Obama and Vice President Biden, who have each, personally and emphatically, spoken to the need for improved data sharing–to those in the arena who are responsible for refining, executing and enforcing policy, determining how it is actually lived.
As Charles Dunlop poignantly reminds us, we should share consented health data–and champion the sharing of consented health data--as if we’re each an afflicted patient, because one of these days, we might be. Perhaps it’s time to recognize that data sharing in healthcare is not a noble exercise in altruism but rather the urgent pursuit of our enlightened self-interest.
