By Charles Ornstein, ProPublica
Two years ago, when I attended my first Health Datapalooza, much of the hallway chatter focused on the dearth of data available to help patients and doctors make better health decisions. The Centers for Medicare and Medicaid Services had just started releasing massive data sets, but no one really knew how much data CMS was willing to release or how useful those data sets might really be. Information and tools from private insurers were few and far between.
It’s amazing to think how much things have changed in such a short time: Government agencies (and CMS in particular) have released data sets at a pace faster than I expected, and the discussions are shifting from what data needs to be released to what to do with all this information.
ProPublica, for one, has created and updated tools that let people examine their doctors’ prescribing patterns within Medicare’s drug program (and compare them to others in the same specialty and state), review the services their doctors perform in Medicare (and similarly see it in context) and find the payments the doctors have received from drug and medical device companies.
The Wall Street Journal has a great look-up tool to compare doctors. Others, including Amino, Docspot and Consumers’ Checkbook, have developed tools, too. And data journalist/agitator Fred Trotter has some interesting data projects under way at DocGraph.
To be sure, there’s a lot more information that still needs to be released publicly.
I personally would like to see data on the services delivered in Medicare Advantage (a growing sector of health plans serving Medicare beneficiaries) and state Medicaid programs (which now cover more than 70 million people). Why stop there? It also would be great if the Department of Veterans Affairs and the Department of Defense publicly released detailed data on the health care services they pay for. And private insurers should play a role too, pooling their data and releasing it publicly with little or no charge.
But while liberating data will always be fun, the new questions data journalists and the broader health data community face are just as pressing, if not moreso. What are the stories that need to be told with this data? Is there such a thing as a good doctor and bad doctor, and can we find the answer in the data? How do we connect all of this information in a way that means something to real people? How much do people care about having data at their fingertips?
I look forward to Datapalooza this year because the discussion, access to newsmakers and hallway conversations will give me new ideas, cause me to question existing ones and make me smarter.
Charles Ornstein is a senior reporter at ProPublica, a nonprofit news organization in New York. He is the recipient of the 2014 Health Data Liberators award from the Health Datapalooza and serves on the 2016 Health Datapalooza steering committee.