If you happened to be on the Internet, particularly Twitter, a couple weeks ago, you likely noticed the deluge of tweets about SXSW and requests from people to get you to vote for their session. Today, I wanted to share my session and spark a little debate. My session is all about why healthcare privacy will soon disappear and why we’ll all be healthier for it. More on that in a minute.
But first, in case you aren’t aware, SXSW is (now) a huge conference held each year in Austin that features interactive, music, and film portions. The sessions for this conference are in part selected by the votes and comments that the public leaves about them (they count for 30% of the selection criteria). So, you have a chance to dictate what goes on at this conference. Why should you care? Regardless of what industry you are in, I’d strongly recommend considering this conference next year. Last year was the first year that there was a strong contingent of healthcare related sessions and this year there will likely be even more. So, you can go and hear some great healthcare related talks. However, I’d recommend that you go to listen to everything else (assuming you work in healthcare everyday). Why? Well our healthcare industry could use a little outside influence from time to time just to see what’s possible and where we might be headed. If you only look at healthcare all day, you’ll never see “what’s next” until it’s too late.
Last year, your votes and comments were enough to get me a spot at the conference. Thank you once again for your support. In case you weren’t there or missed the video of my presentation, here it is:
I wanted to share what I’m planning for the SXSW 2012 and invite you (if you are so moved) to vote for it and leave a comment on the SXSW site about why you think the topic (or I) might be interesting. It’ll only take a second (I promise). The name of my talk this for 2012? Saving Some Lives: The End of Healthcare Privacy. You can follow that link to vote or comment on my session and to read a bit more about it. I’ll post the brief description here for your convenience too:
Today there is nothing we keep more private than our healthcare information. We don’t share it with anyone except for our family and closest friends. But we haven’t considered that this just might actually be making us sicker.
There was a time not too long ago when the thought of sharing our locations, intimate family pictures, or what we ate for dinner was taboo. It was private. Today, we don’t think twice about sharing these things and much more. And we share it with not only our friends and family, but willingly broadcast it all over the world to perfect strangers. It’s the new normal.
But there’s still a stigma around sharing our healthcare information with the world when sharing it could be the key to preventing, curing, and treating the diseases that kill us. It could help us avoid the next pandemic and uncover hidden cancer clusters. It could detect a genetic abnormality before you know it’s there or tell you where the healthiest place to live might be.
There’s a simple reason why people are willing to share some things, but not their health related information. When we share other information, we typically get something back in return. Sharing our location might get us a discount. Displaying our wedding pictures might elicit some well wishes from friends. But what value do you get when you share your healthcare information? Today, you don’t get much, so there isn’t an incentive to share. That’s about to change thanks to innovations in digital technology.
I’m also planning a couple of experiments to demonstrate the value of sharing your healthcare information publicly. I can’t share what they are right now, as that might confound the results, but I guarantee the results will surprise you.
When I share this premise with most people, they scoff and say that no one will ever be willing to simply share their personal health information. Fair enough. We all used to say that about a lot of things that we readily share with the world today. It’s a little bit before its time, but I think it’s time to get the message out.
I’ve actually talked about this concept before in a couple of talks. I mentioned this concept in my SXSW talk (embedded above) and discussed it some more in a talk I recently did on the the future of healthcare. You can jump to 16:45 mark of the talk to hear some of my thoughts on healthcare privacy and how it is already saving lives.
Still, many still think that we’ve got a long way to go until we’re ready to share our health information more broadly. I don’t think that it’s quite as far off as what many people believe. It’s already happening today and I included a couple of examples in my talk. There are countless other places where people are already sharing a lot of detail about their health. They share this personal information because they get a lot back in return. They get support from others with the same disease. They find out what treatments might work even better for them. They learn what might happen to them in the future and what they can do to change those outcomes. And most people do this while readily sharing their real name and identity. Take a site like TuDiabetes (one of my favorite examples of how a healthcare community should work). You’ll find a ton of detailed discussions about people’s intimate health details and it’s all shared in the spirit of improving care. And it works. Patients Like Me works similarly and adds a layer of analytics, which allows you to compare your results with others like you to see if there is anything you can do to improve your outcomes. CureTogether is a bit more anonymous, but people are sharing everything about their health to better understand what diseases they may have or be at risk for. In many cases, they find connections between diseases that they or their doctors might never have made on their own (and the findings from their user submitted data matches that of large, randomized trials).
There are, of course, many more examples, and these sites are just the beginning. My SXSW talk will take it even further and show you what a world with complete healthcare transparency looks like. I’ll give you a hint: you’ll be a lot healthier.
Thanks in advance for your support. And, again, if you’re interested in voting for or commenting on my proposal, you can find it here: Saving Some Lives: The End of Healthcare Privacy.
I did say “Discuss” in the title of this post and I meant it. Feel free to also leave your comments below and let’s discuss. I know I can always count on my readers for a lively debate. I’ll be responding to every comment, so I welcome the discussion.