When googled – the phrase no data about me without me seems to have many more search results coming Europe than the US. It has a nice ring to it, doesn’t it? This week I attended a conference called Health Datapalooza. Now that I am back from the palooza of health data, I will do my very best to pass along what I learned as I try to get this phrase out of my head.
You may be asking: what the heck is a Health Datapalooza and why was Brave Bosom there? Imagine a three-day bender of health data where data geeks are rock stars. Big data consultancies, entrepreneurs, government officials, hospitals, physicians, and journalists sit on panels and talk about how patients can be engaged with their data. If you’re anything like me, the idea of a health data bender seems like it might be off-putting. Trust me, there were moments that were incredibly off-putting and outside of my comfort zone. There were moments when I felt like a minnow in a health data shark tank. And times when I felt very concerned about the future we are creating. But there were also moments where I started to feel hopeful about how we can solve practical problems in the BRCA Community and excited to return. And that, my friends, is the best way I can describe a Health Datapalooza.
Why was I there? I was invited to the conference by a few thoughtful people who understand the e-patient movement, and the problems that have been created for the BRCA community by the proprietary database that Myriad keeps on our community’s variants. You can learn more about these people here and here and here. I was invited to speak from the perspective of a Previvor about my passion for citizen science, research, health data, and BRCActivism. I talked about the Free the Data movement and a project I’m excited about which FORCE is launching called the ABOUT Network. I had a few simple messages as I spoke which I was excited to see tweeted out during the conference:
— John Wilbanks (@wilbanks) June 2, 2014
— Dana Greenfield (@DanaGField) June 2, 2014
@BraveBosom~ Research data talk rings hollow w/out clear good – from view, frame & to the patient.
— Jerry Matczak (@gmatczak) June 2, 2014
— Casey Quinlan (@MightyCasey) June 2, 2014
Takeaways. I highly recommend that others attend health data conferences, and I recommend Health Datapalooza for e-Patients. In fact my biggest takeaway was that, we need more patient voices at a conference like Health Datapalooza. I saw a handful of ePatients in a sea of thousands. Until we have more patients at these things, the BRCA /HBOC community won’t be able to make heads or tails of all of these shiny new data gadgets and platforms.
My other takeaway was some incredible tools which you have access to. These are two very practical examples of how and why we can benefit from open and accurate data which can keep the healthcare system more accountable:
- Open FDA:
- Still in Beta, this tool is going to open up anonymized data to make healthcare more transparent: http://open.fda.gov
- ProPublica (IS AMAZEBALLS!!):
My advice to Previvors? It’s very similar to the advice I would give to someone who just tested positive for a BRCA mutation. Don’t be afraid of this coming tsunami of health data. Embrace it. Ask tough questions. Push yourself to understand what your data means and how it’s being used. You deserve a seat at the table so decisions aren’t being made about you without you. Your future depends on what you decide to do with the information.