When you work in clinical trials, this tweet is not the sort you typically see coming out of a conference session
you’re attending. The tweet was in reference to a presentation focused on FITApocalypse, a functional fitness program to prepare for the zombie apocalypse.
The session was led by Lucy Leitner, a personal trainer and the author of zombie-comedy novel Working Stiffs. Lucy has combined her
interest in fitness and zombies to create FITApocalypse, which we learned about in a highly educational and
entertaining conference session.
“It May Not Be Perfect, But It Is Ours”
The Partnership with Patients conference, often referred to as Cinderblocks2, is certainly not your typical healthcare conference. Most notably, the conference is organized by patients for patients. Headed by Regina Holliday, a tireless and talented patient advocate known for her Walking Gallery, Cinderblocks2 “is a place where art, medicine, social media and pop culture collide and create a patient voice in health information technology.” The conference is held in the scenic and serene mountains of Western Maryland, a stark contrast to the setting of most healthcare conferences.
Though Cinderblocks2 did not lack fun like that we had during the FITApocalypse session, it also did not lack
seriousness. Many of the speakers and attendees had found themselves engaged in patient advocacy because of trying
and tragic situations with their health and the healthcare system. These experiences were shared in formal
sessions, as well as during casual conversations throughout the event. The vibe was retreat-like but with an edgy
undercurrent. In fact, Regina’s response to a description of Cinderblocks2 as a retreat was, “I don’t host
retreats, this is an attack.” Cinderblocks2 is for patients who are in it to change it.
A Journey That Began Three Years Ago
Joe Kim, Rahlyn Gossen, and I ended up at Cinderblocks2 because of a journey that began three years ago at the very first Partnerships with Patients conference in Kansas City. At the time, Lilly Clinical Open Innovation (LCOI) was a fairly new team within Lilly, and we’d only been blogging about six months. In the course of my work as Community Manager, I’d heard Regina’s story. Determined to learn from Regina and other patients, I and a couple of other folks from LCOI headed to Kansas City for the conference with the primary goal of listening. The experience was so valuable that we continue to look for opportunities to listen to patients whenever we can.
During the course of this listening, we’ve also been heartened to hear more discussions about clinical trials. A few years ago, we really didn’t hear much talk of clinical trials at Partnerships with Patients or general healthcare conferences. More recently at Cinderblocks2 and other healthcare conferences, we’ve noticed conversations among patients and professionals about clinical trials. We get especially excited when patients offer their input on clinical trials, as Dave DeBronkart aka “ePatient Dave” and Kym Martin did during their Cinderblocks2 presentations.
A Collaborative Art Project
Our first time at Partnerships with Patients we basically just showed up, but this year we wanted to be more involved. One aspect of our involvement was planning a collaborative art project focused on clinical trials. Regina provided each attendee with three paper circles of different sizes. We asked attendees to paint their perceptions of clinical trials on their three circles. The circles could reflect how research had impacted their lives, their thoughts and feelings about research, or their experience with clinical trials.
Carly Medosch, an attendee of Cinderblocks2, is a chronic
illness patient advocate / speaker and program analyst. She's also a former clinical trial participant. Carly
shared the stories behind the circles she painted as part of our participatory art project.
“The top bubble represents Loran Cook’s comments at Datapalooza when she told the White House team that sometimes patients don't want money - they want time. The question mark is for those people who may not know if they are getting active medication or placebo - that can be very scary, especially if you are very sick. The tiny image is for the way I felt I was treated as a participant in clinical trials -- it was the best example of patient-centered care I've ever experienced in over 21 years of medical care.”
Regina collected everyone’s circles and incorporated them into a painting, which you see below. This painting now hangs in our Indianapolis office.
A Social Synopsis of Cinderblocks2
We can’t possibly communicate the passion, strength, and diversity of patient voices at Cinderblocks2. These voices are something that must be experienced to be truly felt. But social media is a great tool to at least give you a glimpse of these inspiring voices. Carly Medosch created a wonderful Storify for Cinderblocks2, which catalogues the social media posts of attendees. We are embedding a very small sample of these social posts below, but we highly recommend you check out Carly’s Storify. It would be time very well spent.