One week ago the inaugural e-Patient Connections conference came to an end, and I must say I’m still decompressing and trying to make sense of it all. Many have done an excellent job summarizing the event and highlighting special sessions. To get content summaries you can:
The highlight for me was the Pecha Kucha session from Dr. Val Jones. Her “Tale of Two e-Patients,” is a great reminder that there is a right way to be empowered and engaged and a wrong way. I was glad I wasn’t moderating that session because I was choked up by the end of her 6 minutes and 40 seconds. Being an e-patient is about being actively engaged yourself; it doesn’t diminish the role or value of your physician.
My only real disappointment was the fact that I started losing my voice the day before the conference even began. I tried my best to mingle and chat Sunday and Monday nights, but each night I had to retreat early to the comfort of hot honey water. I knew having a voice was the most important thing, but felt like a rude host and wanted to spend time with my new friends.
Overall I think we accomplished our goal, which (again) was to bring together health communicators from different industries to compare and contrast the best ways to connect with empowered, digital patients. The term “connection” has a double meaning - connect with patients, but also connect with each other. What delighted me the most was the unpredictable ways connections were manifesting themselves at the conference. I learned from dozens and dozens of speakers and attendees. Some of my favorite moments:
“e-Patient Dave deBronkart” publicly thanks Novartis for saving his life.
Yes, the personification of the e-patient movement teaches us that you can be pro-patient without being anti-pharma.
From patient blogger Diane Bayer, “…after my talk I sat down in the back and this fellow with a pharma company…he told me he was really amazed by my talk because he has a six year old son who has been diagnosed with autism. Then he proceeded to show me the pictures of his son…and my god…he looked just like my son! This person had come for business reasons but then we connected in a very human way. ”
Yes, we are all caregivers, we are all patients; as e-Patient Dave boomed, “Your day will come!”
Susannah Fox, from Pew Internet and Mark Bard, from Manhattan Research sharing perspectives on e-patient trends and publicly acknowledging that it’s great to be presenting together.
Yes, commercial and non-profit research can both shed light on the changes around us.
There were several tweets and comments about what a great guy Paul Loebach is and how he offers a great face to the FDA. In the breakout sessions he offered some eye opening insights into why the FDA does and doesn’t do certain things.
Yes, even the FDA and pharma folks can connect and gain a better understanding of each other.
Jim Currie from “N’Awlins” shouted to me as he was leaving the hotel, “Kevin, my goal is to go back and implement something that is worthy enough to get me invited back to present a case study at next year’s conference.”
Yes, we can inspire and learn from each other.
The challenge of producing a 2-day conference is nothing compared with the challenge of keeping the community alive beyond the walls of the Bellevue. Hopefully we’ve sparked something that will continue to grow and continue to benefit the patients and caregivers who we ultimately serve.