Dispatches from Datapalooza: Focusing on the Patients

Jun 3, 2013, 8:00 AM, Posted by Beth Toner

From: Beth Toner

To: Christine Nieves, Paul Tarini and Thomas Goetz

Date: June 3, 2013

So, I’m not the “rookie”—as you are, Christine—nor am I a seasoned veteran like Thomas and Paul. This is my second Health Datapalooza. Last year, I’d been at the Foundation not quite three months, and while I’m a health care provider, I can honestly say that I felt completely overwhelmed by how much I didn’t know about health data.

There’s still a lot about health data I don’t know, but I’ve been lucky enough to connect (both virtually and personally) with great colleagues and mentors who have given me a glimpse into how powerful data can be. For me, it all comes back to the patient: How can we harness data to change the way patients participate in care? How can we help patients harness their own data?

You mentioned innovation in diabetes, Christine. My first thought was of the patients in the free clinic where I volunteer. They are all uninsured, and many of them are managing (or not managing) diabetes. I'm interested in learning about data innovations that can help me provide them with better care—and most importantly, empower them to take charge of their diabetes.

I won’t be at too many of the sessions (I’m bummed I won’t get to catch your MC gig, Thomas), but I’m excited to be staffing the RWJF booth this year. As Christine said, I hope to meet many of you whom I’ve only known virtually—folks like Wen Dombroski. (Wen, I’d love to pick your brain about how we might use data tools to transform long-term care in this country.)

If you stop by our booth (#14), you’ll be able to catch a video of some of the Robert Wood Johnson Foundation’s data-driven grantmaking efforts. You’ll also be able to learn more about the Open Research Exchange, which will draw on data from PatientsLikeMe’s 200,000-member online community, as well as the Health Data Exploration project. We’d also love to hear your ideas and answer questions you might have about the Foundation’s work. Can’t get down to the booth? Tweet me at @BethTonerRN or Pioneer at @pioneerRWJF. We’ll do our best to answer your questions.

Team members from the Pioneer Portfolio, as well as Entrepreneur in Residence Thomas Goetz, are among the RWJF staff attending this year's Health Datapalooza. Datapalooza is an RWJF-sponsored conference that features new and innovative uses of health data by companies, startups, government agencies and more.

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This commentary originally appeared on the RWJF Pioneering Ideas blog.