If you are a regular reader, that title might be confusing. However, if you caught last Friday’s post, about the Walking Gallery of Healthcare, you’re partly in the loop. As I explained last Friday, over the past weekend I was fortunate enough to be a participant in the amazing, powerful, inspirational Partnership WITH Patients Summit. There was a lot of great stuff to take away from that weekend, and you’ll be hearing more about it in coming posts. However, for today’s MWB round-up, I wanted to reflect the kinds of voices that I heard this weekend. So, every post I’m sharing this week is either directly about the Summit, or is a blog by a patient advocate–the voices that were the center of the Summit. I hope that you enjoy these posts–I enjoyed the experience of spending time with many of their authors.
About the Summit
One piece of the PWP Summit was Ignite format talks. If you’re not familiar with this format, presenters have five minutes and twenty slides that are auto-advanced every 15 seconds. This is a document that captures the Twitter feed for some of the 15 Ignite presenters, to give you a taste of the great content we experienced.
On Sunday, the PWP summit transitioned into a HealthCa.mp Unconference. If you’re not sure what that is, blogger Scott Strange does a nice summary of it in this post.
Patient Advocate Voices
Marie Ennis writes at Journeying Beyond Breast Cancer, and she shares a piece exploring the value of a blog for cancer patients. Her post echoes a theme heard at the Summit: patient stories are powerful and can be a point of connection.
Patient advocate and rare disease warrior Sarah Kucharski created the Afternoon Nap Society and the FMD Chat community on Facebook. She provides a great example of how informed patients can contribute to the dialogue in her exploration of patient/pharma communication.
Tiffany Peterson is a sparkling personality and a passionate voice for those with lupus. She has created a funny–but painfully true–“Batista Health Rights” based on the Miranda rights.
I actually got to meet some of these writers–they are wonderful, thoughtful, passionate people. I am proud to call them friends, and I am inspired by them all the time. If you are a patient or a caregiver, I hope these stories inspire you to tell your story. If you are already telling your story, please share it in the comments.