Recently, I had the pleasure of helping to represent PatientsLikeMe at the 2nd Annual Health Data Initiative Forum, which is known as “Health Data-Palooza” to its friends. (See our first blog post about this event here.)
The forum was conceived as a way to showcase the wonderful things that people are achieving with open government health data, and it was exciting to see the breadth of applications that are being developed. We saw both the real-world efficacy of a system like Asthmapolis, which uses GPS to track where and how often you use your asthma inhaler, as well as Palantir’s mind blowing demo of how to hunt for the source of a food born illness, which I could only describe as “indistinguishable from magic.” Seeing that the federal government is already starting to get results from this kind of open innovation was really heartwarming for me.
We were especially honored to win the “Best in Plenary Award” (aka “Best in Show”) for our recent integration with ClinicalTrials.gov, which resulted in our new clinical trial search feature. As one of the engineers involved in this project, it was really great to see how quickly something like this can come together. PatientsLikeMe has a great culture of encouraging innovation, which is manifested in our decision to declare every sixth week “Wow Week.” During this special week, every engineer has the latitude to experiment with whatever they’d like. Thanks to the existence of open data sources, there are an amazing number of things we can try without even needing to ask for permission or special access.
One “Wow Week,” PatientsLikeMe Data Analyst and Software Engineer James Kebinger experimented with integrating the listings from ClinicalTrials.gov into our platform. We are committed to using open source tools and data as much as possible at PatientsLikeMe, so James’ idea to pull data from ClinicalTrials.gov was a natural continuation of that philosophy. It took just one more week from there to get to the point where we all realized that this was something that could deliver real value to both our patients and the folks running the clinical trials.
Here is a video of PatientsLikeMe Chairman and Co-Founder Jamie Heywood presenting our new clinical trial search feature at the “Health Data-Palooza” event:
Data mashups have been the buzz for a while now, and there are a number of interesting results that have come out of integrating two large datasets. I think what excited people most about our application was that we found a really clear benefit to patients. Of course, this wouldn’t have been possible without the comprehensive data found on every patient profile at PatientsLikeMe. We like to think about doing as much as we can for our patients while not having to ask additional questions, and I think this was a great example of succeeding in that aim.