At SLEEP 2017, the MyApnea.org patient leaders, with help and guidance from Dr. Susan Redline, organized a 'Learning Lounge' in hopes of being able to start a conversation with sleep providers. Since a patient-led presentation had never been done at a SLEEP meeting, we were not expecting many from the medical community to skip other presentations to attend this one. However, we prepared our stories, facts, and concerns about sleep apnea, as well as information about MyApnea.org. Our agenda included time for Q&A in hopes that someone would show up for a discussion.
We were very pleased when we actually saw people walk through the door for the presentation. We brought forth our concerns and frustrations with the attendees. The session quickly turned into a discussion of treatment options and areas of support. We had expected to tell them about our issues but ended up spending much of the time hearing about theirs. And guess what? They were the same issues.
We learned that doctors are often upset with insurance issues that keep them from helping patients. Your medical provider may be walking away wanting to give you more but feeling like his or her hands are tied by a system that won't allow the extra effort. Patients heard just how much physicians do care and how often are frustrated by the same issues that frustrate us.
Clinicians were impressed by the insight the patients showed and the depth of understanding they expressed about the challenges they face. Researchers heard how grateful patients are for the work they do. They said patient input can help better shape research agendas, something we promote on MyApnea.org.
Everyone came away wanting more--more interaction, more partnerships, and more opportunities to collaborate on common goals. In the end, we found a lot of common ground. We all learned something new. We all gained a new perspective and respect for each other. It is our belief that doctors and patients walked away from the Learning Lounge feeling as though we made a significant connection in our frustrations.
Because of the Learning Lounge, a rewarding but completely unexpected result has occurred. Our Sleep Meeting Learning Lounge Agenda has been developed into a Toolkit which will serve as a resource model for bringing together patients and their doctors in all fields of medicine.
What started as a one-sided monologue turned into a full conversation with opportunities that can benefit all. MyApnea.org patients and partners are continuing the conversation this year at SLEEP 2018. We hope you do too!
"people working together" by "Isbg Six" is licensed under CC BY-NC 2.0.
