Health Care and the Data Divide
Posted in Health Activism, Healthcare on June 29th, 2011 by Marie Connelly – Be the first to comment
This month’s WIRED starts off with a great little article, “Transparency for All”, about the open data movement that’s helped get government data out of the archives and into searchable internet databases. (Link coming when the article is available online). The Sunlight Foundation is probably the most well known example (at least, here in the States), of what can be done with that data once it’s been made available to the public.
In the article, Jesse Lichtenstein highlights some other, and unfortunately less positive, examples of the open data movement’s results to date. While the implicit goal in making all of this information publicly available is to “level the playing field” and allow everyone to benefit from this increasing knowledge base, Lichtenstein argues that open data initiatives have also exposed a growing “data divide.”
The data divide strikes me as the obvious next iteration of the digital divide - more information is not inherently more beneficial if that information cannot be used, or even accessed, by the people who need it most. Of course, Lichtenstein (and the image above) are talking about publicly available data – the kind of information collected by governments and public organizations. Health Map is a great example of open data being used in the health space. (Bostonians and New Englanders might also enjoy Jonathan Dobres post “all about the weathah” that shows some other interesting things you can do with public data.)
What I see more of in the health blogs and communities I visit, however, is a push towards access to personal data. Amanda writes about some of the various aspects of this movement much more eloquently in “How Tech is Making Us More Efficient Health Activists” and Ergascientia offers a great example of what we can do with this kind of personal data – he’s used it to track his cigarette cravings as he quits smoking. In 13 Hours without a cigarette he graphs what his cravings looked like over time. He’s got graphs for each day so far, as well as a post defining the scale he’s used to rate his cravings.
Of course, there are also entire online communities, like CureTogether and PatientsLikeMe, and countless apps, dedicated to helping patients manage their health conditions with thoughtful tracking and monitoring tools.
I’m a big believer in the idea of DIY-healthcare. It empowers patients to partner with their physicians, and fully participate in their health care. It’s your health, and no one else is going to do it for you, right?
I do wonder though, whether elements of this movement are only truly accessible to those of us among the “data elite.”
Even as we bridge the digital divide (and obviously there’s still a lot of work to be done there), we will still have to face the challenges of a data divide. If you don’t know that you have a right to this information, or you don’t know how to translate the information you have into something meaningful, there’s only so much you can do. I hope that as we see more and more calls to “Gimme my damn data!“, we’ll also see more education for patients and their families about what that data can do for them, and how they can begin to make sense of it.
Are there resources out there to help patients increase their data-literacy? Where do you point people when they have questions about the open data movement, or their own health data?
Image courtesy of opensourceway on Flickr
