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.
In addition to demonstrating the value of open data, applied technology, and applied innovation models, the Datapalooza brings focus on the patient at the center of the healthcare ecosystem.
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?
Regina Holliday’s husband Fred died of kidney cancer on June 17, 2009. His untimely death was a tragedy, but it served to reveal a gap in today’s healthcare landscape: patients’ access to their own medical data.
Telling her story, Regina recounts a lack of communication from Fred’s doctors and significant roadblocks to crucial information about both his history and the state of the cancer. Not long after his diagnosis, Regina lost her husband. But in that, she embraced a mission – and started a movement.
“The Walking Gallery” is a big part of that movement. It refers to striking, full-color mural scenes Regina has depicted in acrylic paint on the backs of suit jackets and lab-coats. The painted garments tell myriad stories: from patients’ struggles to health care enigmas, to reform ideas for national and global issues. They are worn to conferences and events by a variety of health advocates and friends of the movement.
Regina’s message is that without patients’ unique stories and perspectives, information that the public receives about disease, treatment options, and the whole of patient care is incomplete. More…
This is the second in a series of blog posts introducing the LCOI-API. We’ll be looking at a couple of its features, encouraging its use by developers to create solutions in the spirit of clinical open innovation. Read the first post of this series here.
You may have read a few days ago that we launched version 1.0 of our LillyCOI-API. We mentioned that the genesis of an Open Clinical Intelligence Network (OCIN) means that developers, informaticists and others will be able to create their own applications to Collect, Consume, Curate and Connect around digitized clinical objects.
As you know, V1.0 initially sources data from clinicaltrials.gov and transforms it into a format that web app developers can work with. It is currently read-only, but we wanted to highlight a couple of the ways our LCOI-API accomplishes that transformation.
First, we elected to use JSON and Exhibit JSON data notation. Clinicaltrials.gov uses XML for data handling, but XML requires the developer to go through more steps to reach the same result, and is not easily web-ready.