Dave, Rishi, and I spent a few days last month in sunny La Jolla, California – site of the biennial PFF Summit. Well, La Jolla is usually sunny… this year it was unseasonably cold and rainy! Nevertheless, not even the nasty weather could dampen the enthusiasm of more than 500 clinicians, researchers and (most importantly!) patients and caregivers who turned out from all over the world to meet up and share the latest research on pulmonary fibrosis.
The PFF Summit was hosted by the Pulmonary Fibrosis Foundation (PFF), who we met a few months after announcing the launch of the PatientsLikeMe IPF Community. We were very enthusiastic to help support the PFF’s work by sponsoring and contributing to the research exhibition at the summit. While I spoke with patients, caregivers and clinicians about our open patient registry and the history of PatientsLikeMe, Dave and Rishi learned about the latest advances in PF research and shared our study of the impact of PF on patients’ sleep. If you haven’t heard about it yet, here’s what we learned about PF patients and sleep:
- A total of 66 IPF patients reported having or possibly having sleeping problems, and 47% of these had sleeping problems between 1 and 5 years.
- Over half of our IPF members said that their sleeping problems were moderate, severe or very severe, and that their sleeping problems had affected their quality of life in the past 4 weeks.
- IPF patients that have had sleep problems for a long time tended to report a lower quality of life.
There were many moments that both inspired and enriched our time at the Summit. Some highlights include:
- Hearing patients say, “I’ve heard of you!” or “I just joined the community!” Welcome and thank you!
- Watching patients engage with the science and ask thoughtful, tough questions of the medical experts in their field
- Chatting with the caregiver of a newly diagnosed patient about how much support she had gained from connecting with other patients and caregivers through their local support group
- The PFF’s announcement of plans to build a clinical registry and care center network with leading PF researchers and their institutions beginning in 2015
We had a lot of fun and learned even more, but we came home knowing there is still much to be done back here in Cambridge on behalf of all patients. We continue to be proud contributors to patient-centered research that advances medicine. On a personal note, I am profoundly grateful to all our members, for your continued openness and the courage with which you continue to share your story. It is always a pleasure to meet you in real life. You’re the reason every person on the PatientsLikeMe team comes to work every morning, and why we continue to believe that it’s you – the patient – that will change healthcare for the better.