The Health Datapalooza holds a special place in my heart. I recall last year walking to the conference hotel with Lilly COI colleagues Barry Crist and Dave Crumbacher, and our attention being drawn to a number of people wearing jackets with brightly colored imagery on their backs. As a comic book fan, it flashed through my mind that the images might be of superheroes. In a way, that’s turned out to be true.
The litmus test for technology and data innovation is how lives are improved for patients. Connecting with Casey Quinlan, Kim Martin, Erin Gilmer, Regina Holliday and others in the Walking Gallery at this year’s Datapalooza helps to keep the patient’s story top of mind.
What is Health Datapalooza?
Health DataPalooza’s primary mission is to unleash the power of open health data with the help of technologists and data professionals. The notion of open data is fundamental to us at Lilly COI. Adding value to ClinicalTrials.gov by making it more easy to search, and developing other open sources to improve drug development is a big part of what we’re about.
Heath Datapalooza’s origins are rooted in the Health Data Initiative, initially a partnership of the non-profit Institute of Medicine and US Department of Health and Human Services. Over time, the Health Data Consortium (HDC) emerged as public-private partnership with a mission focused on health data collaboration and innovation.
Dwayne Spradlin, formerly of Innocentive is now the CEO of the HDC. An experienced innovator, Dwayne will shepherd HDC towards their vision with grace, humility and the necessary collaborative spirit. It’s no surprise that the Challenge Series has been introduced as a means for HDC to facilitate innovation in healthcare.
Pharma Industry Participation
Last year, pharma industry presence at the Datapalooza was scarce. This year saw an increased presence, with more indications that pharma is participating, innovating and providing value to patients in an increasingly more open healthcare ecosystem. The trend is heading in the right direction, but there’s plenty more work to be done.
It was encouraging to see several new ideas where pharma is working to improve clinical trials and the patient experience. Here are just a few:
1. Devices to make it easy for patients to take, track and communicate dosing can have a huge impact on a patient’s clinical trial experience. This year’s inaugural Challenge Series had Sanofi sponsoring the Data Design Diabetes challenge, focused on “combating diabetes by integrating open data with human-centered design.” One of the finalists was common sensing, who submitted GoCap.
The GoCap is a connected pen cap that automatically logs insulin dose amounts and times, and communicates wirelessly to a mobile phone or connected glucometer. GoCap could improve the patient clinical trial experience, drive better protocol adherence, and improve data capture & management by automatically transferring data without human intervention.
2. Craig Lipset announced a Pfizer pilot project to provide Blue Button access to clinical trial participants. Blue Button is an initiative and web technology that allows patients to access their electronic health records. Within the clinical trial space, Blue Button will allow participants to download their individual data from the study in which they participated. Patients can use this data at their discretion.
3. Strides are being made in coordinating clinical trial information through Linked Data techniques. Many health care organization struggle with relating the outcomes of already existing data (e.g. clinical trials) to their own research. A panel discussion featuring AstraZeneca’s Principal Informatics Scientist Tom Plaster and representatives from tech companies 3 Round Stones and Ontopro, showcased how semantic web applications can be used to foster “cooperation without coordination.”
Healthcare needs not only innovation, but also transformation. When I look back to last year’s conference I can definitely see the trend toward transformation occurring. I’m looking forward to continuing the conservations we started this year about ways we can transform the clinical trial process with a patient-centric focus.