The Open Patient has humble beginnings rooted in the open source way where good ideas can come from anyone and anywhere.
Rushing out the door into the gray morning for another business trip, Mark Coggin, director of product marketing for Red Hat, grabbed the damp copy of the Boston Globe lying in the driveway. He stuffed it into his carry-on bag thinking he might get to it on the plane.
The full-color spread on pages 4 and 5 of section C featured Steven Keating, an MIT graduate student who had been diagnosed with a grade 3-4 astrocytoma brain tumor. A fiercely curious 27-year-old entrenched in the age of social media and the internet, he knew the potential of sharing and he bravely chose to upload his medical information to a public web page in an effort to find the best treatment. He used his skills as a scientist and documented every step of his journey, connecting with doctors, surgeons, patients, and researchers while he began to untangle the web of a difficult diagnoses. Somewhere in the process of dealing with his own illness he found that sharing not only helped him make better decisions and find the best, most qualified doctors, but his medical data, his experiences, and his questions helped many others who are faced with difficult medical situations to know that there is a different way – a more open way.
It was this way that grabbed Mark’s attention that morning on the plane, not the diagnoses, serious as it is, but Steven’s approach to the diagnoses and subsequent treatment. This story resonated so deeply with Mark that he carried this section of the paper folded and tucked next to his computer for months. After seeing the first Open Source Story, Penn Manor: The power of open in education, at the Red Hat Summit, he knew immediately where the paper needed to go next. A little while later a folded and somewhat abused section of the Boston Globe showed up in the Creative Strategy + Design office in Raleigh, NC. Mark had run into our director, Mike Esser, in a meeting, had passed on the newspaper, and it eventually found it’s way to the story development team.
When we share stories, we build, we grow, we change, and we connect.
Our team took Mark’s initiative and went out in search of a film. We connected the dots between patient stories, research stories, different institutional initiatives and current open source research projects, and we built the film The Open Patient: healing through sharing.
When was the last time you were impressed by someone’s initiative? By an achievement that required difficult open source collaboration? Share the story. You can email firstname.lastname@example.org and join our effort to shepherd our open principles into a future you want to live in.
Steven continues to share his medical data and advocate for openness and transparency in the medical world through his website and interviews. If you want to learn more you can visit http://stevenkeating.info/main.html