If you missed taking part in the February 3rd #hcsmca Twitter Chat on storytelling + preparing for Rare Disease Day, or you're looking for a recap of the lively session, visit the event storify. It offers a great capture of why patient stories are so important and some of the challenges we must overcome to guarantee we are making the most of what stories have to offer. You will also find links to a number of relevant resources shared by participants.
Chat contributors fully embraced the topics up for discussion:@drpauldempsey 20 years ago, my story didn't matter, I was told what to do. I love the change now since I'm asked what I need next. #hcsmca— Martin R. Lemieux (@martin_lemieux) February 3, 2016
- T1. How do patient stories impact the rare disease community?
- T2. How can we better value patient stories and respond to the insights shared?
- T3. What benefits should patients look for from contributing their stories?
- T4. What stories are missing from the rare disease community and how can we encourage different voices?
Full chat transcriptions also available from #hcsmca
Do stories change anything? #hcsmca storify