NICAR talk

The road to health is paved with good data

This was originally published on the ProPublica Nerd Blog.

By Ryann Grochowski Jones, ProPublica

I think I’m a decent arbiter of people’s appreciation of data. I worked at IRE’s data library as a grad student and I’ve attended four consecutive NICAR conferences. At ProPublica, I work with complex data sets every day. I help run our data store, so I can see how excited data-savvy reporters can get when working with great data sets.  So you’ll forgive me if I viewed attending Health Datapalooza with a small bit of skepticism.  Surely, I thought, a bunch of healthcare nerds could never match the enthusiasm and bordering-on-obsessiveness of news nerds when it comes to data.

My assumption was quite off-the-mark. Health Datapalooza, despite (or maybe because of) its ridiculous name, was incredibly awesome and useful. I found many open-data compatriots among the 2,500 attendees – and very few of them were journalists. Instead, they were patient advocates, doctors and nurses, health policy wonks, insurance adjusters and app designers. The conference sessions taught me about upcoming data releases and new statistical analysis techniques; even better, I left with a crazy number of story ideas.

In a session on statistical correlation, Dr. Sujata Bhatia, a biomedical engineer at Harvard, brought up a fascinating issue: The Affordable Care Act will add millions of new people to insurance rolls and thereby change the make-up of the patient population that forms the baseline of many healthcare studies. Will those studies’ conclusions need to be revisited? Dr. Bhatia and others are still attempting to find the answer.

I also found out that Fitbits and Jawbones are already outdated – health-data capturing will soon involve tiny microchips that stick to your skin like a band-aid. I watched some super-smart app developers at work during the “Code-a-Palooza” live judging. I even learned that Florence Nightingale was one of the first people to design a health data visualization.

Palooza speakers (they really missed out on a opportunity by not calling them ‘headliners’) included surgeon/journalist Atul Gawande, U.S. Chief Technology Officer Todd Park, U.K. Secretary of Health Jeremy Hunt and former Secretary of Health and Human Services Kathleen Sebelius in the last few days of her job. Hunt’s keynote was especially fascinating – he discussed the U.K.’s efforts to reduce patient harm in hospitals, a story ProPublica’s been following for some time.

Like any conference, the real value was in the networking. I was introduced to Amy Gleason, who came up with an app to help manage care of her chronically ill daughter. I finally met the ebullient Fred Trotter (I’m convinced he’s the only rival to my colleague Charlie Ornstein when it comes to a passion for health data). I also got to meet some folks from Centers for Medicare and Medicaid Services and ResDAC in person – I’m usually bugging them for help over the phone or via e-mail.

And we even won a “Health Data Liberators” award.

For more takeaways from Health Datapalooza, I recommend this blog post from MedCity News.

 

Ryann Grochowski Jones is a data reporter at ProPublica. Previously, she was a data reporter for Investigative Newsource/KPBS in San Diego, Calif. She received her master’s degree from the University of Missouri School of Journalism, where she was a data librarian for Investigative Reporters and Editors/National Institute for Computer-Assisted Reporting. Ryann started her career as a municipal beat reporter for her hometown newspaper in Wilkes-Barre, Pa.

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