The Human Factor: Dr. Eric Topol on Why Patients Must Own their Medical Data
By Ana Santos
In his keynote speech at Med X, Dr. Eric Topol of the Scripps Institute delivered a plea for medicine democratization through data transparency
FRIDAY, Sept. 25 – Who owns your medical data? As it turns out, in 49 out of 50 states in the United States it belongs to your health care provider or hospital. “And that has to change,” says Eric Topol, Professor of Genomics at the Scripps Research Institute and one of medicine’s most innovative thinkers about the digital future. As the keynote speaker, Topol opened the first day of Medicine X 2015 with a powerful message: patients must own their data. “It needs to be considered a civil right,” he said, “and a civil right is not under debate.”
Medicine is on the way to an inevitable revolution, Topol argues, mainly because of two intersecting trends. First, the explosive growth of health care apps and devices that enable patients to measure heart rates, blood pressure, and blood glucose levels—to name a few. “With that, an increasing portion of all medical testing is not done in labs,” he added. To prove that such changes are not only achievable, but are happening right now, Topol cited the state of Arizona, where, since April, patients may order any test directly from licensed labs without a physician’s order. Beyond ordering, people will be soon doing tests themselves in their smartphones, “which is fueling our ability to democratize medicine,” he concluded.
The second trend is well known to most patients: the shortage of health care providers. Topol pointed out that, in the United States, “it takes 2.6 weeks to get an appointment with a primary care doctor on average.” And the wait game is not over once patients are scheduled, since the average length to get into the doctors office is 64 minutes. In contrast, “there are other entities willing to see you at any moment in time. One of them is called Heal and is backed by Lionel Ritchie. I wrote to him and said ‘Maybe you should have called it ‘All night long’. He said ‘No, it’s all day long too’,” Topol added, amongst laughter from the audience.
The convergence of these two factors is at the core of medicine democratization, where treatment, wisdom, and guidance are provided by the doctors, but in much more partnership with patients. The problem, however, is that patients want their data more than researchers or their doctors want to give it to them. “We cannot democratize medicine until we get this fixed,” Topol said emphatically, adding that doctors don’t believe that patients can handle getting their data—“humans are underrated, particularly by doctors and hospitals. But yes, we can handle it!”
Despites the joking tone, Topol left the audience with the certainty that, even though there are many challenges to be faced, the democratization of data is where medicine is headed. It allows patients and doctors to adopt technologies that improve efficiency, lower costs and make treatments more accessible and effective. And such insurgency can’t happen soon enough.
Ana is an MA student at Stanford’s data-driven journalism program. She has extensive experience with reporting and corporate communications in her home country of Brazil and in Europe. Find her on Twitter at @anacrochas.