Partnership with Patients — A Conference Like No Other
The energy in the room was palpable. I go to many conferences and events, but this one was different. No canned speeches. No boring PowerPoints. No people you’re trying to avoid. Instead the inaugural Partnership with Patients Summit, held September 21 through 23 in Kansas City, MO, was filled with animated conversations, real-world education and tons of audience participation. And hugs, lots of hugs, among friends and colleagues meeting for the first time after having gotten to know each other through Twitter and Facebook.
Partnership with Patients (PWP) was the brainchild of artist, blogger, orator Regina Holliday. For those who don’t know Regina, it’s only a matter of time. She is one of the most active and effective patient advocates in the country, perhaps world. Regina is a tireless spokeswoman for patients’ rights, with a particular focus on medical data access. The conference objective was to bring patients, providers, government and industry together on neutral ground to learn about each other and share specific strategies for engaging more effectively. As Regina wrote before the conference, “For too long patient input has been an afterthought in health policy. We are changing that.”
For too long patient input has been an afterthought in health policy. We are changing that.
Intouch Solutions supported the event providing funds for patient travel and sustenance (food/drink). It was an easy decision because our roots are in patient empowerment. Our CEO Faruk Capan created the first online community for multiple sclerosis (MS) patients (MSWatch) after observing how lonely and isolated many felt. Plus PWP was being held in Kansas City, which is HQ for Intouch. We had to be involved!
Unfortunately I couldn’t stay for the entire 3-day program but was there for Day 1 and most of Day 2 (until dinner). The energy, the people, the quality of discourse made an impression on me. There was so much warmth, inclusiveness and frankly, love, in the room. I don’t get to say that about most conferences.
In no particular order, my personal Top 10 list from PWP (a/k/a #cinderblocks on Twitter).
- Re-connecting with Michael Millenson, incoming president of the Society for Participatory Medicine, and hearing his sage words at the opening of PWP.
- Getting sprinkled with purple fairy dust by Amanda Greene (@LALupusLady).
- Listening to Lisa Fields (@PracticalWisdom) share tips & tricks on using PowerPoint effectively, and using Ferris Bueller to drive home a point.
- Seeing how eloquent and effective Tiffany Peterson (@TiffanyAndLupus) is when speaking about the challenges facing patients.
- Meeting the people behind their Twitter handles for the first time : @stales (Alicia Staley), @kaitbr (Kait Roe), @Practical Wisdom (Lisa Fields), @AlexYperifanos (Alexandra Yperifanos) @FMDChat (Sarah Kucharski).
- Learning about Eli Lilly’s effort to bring open innovation methods to drug development from Jerry Matczak, Gary Takher & Dean Sellis of Lilly COI.
- Marveling at Regina’s Lego display at Friday night’s Welcome reception — see the photo in Gary’s blog post Patients Connected Like Legos.
- Having an unfiltered, honest dialogue about perceptions of pharma by the patient community. (See my colleague @WendyBlackburn’s blog post for more on that discussion.) Thanks especially to ePatient Dave DeBonkart, Dr. Steven Daviss, and Michael Weiss for their participation.
- Hearing about new practice approaches and tools from Dr. Ryan Neuhofel of NeuCare and Dr. Joe Ketcherside of PocketHealth.
- Getting a big bear hug from Regina (@ReginaHolliday) and knowing she meant it.
What a privilege to be part of this ground-breaking event.