As the week wraps up I thought I would take a minute to share a little about one of my meetings today. Have you all heard us talk about PCORI? If you joined in the Research 101 webinar yesterday you heard the message that patients and caregivers have a role to play, not just in participating in clinical trials, but actually informing their 
design and conduct. PCORI, the Patient Centered Outcomes Research Institute, has been driving a change in the research culture to make it more organized around the needs that patients, caregivers, healthcare professionals and others have for information that will help everyone make better decisions in healthcare.
So far PCORI has provided funding for COPD related trials in areas such as the use of community health workers, nurse educators and patient coaches, exercise coaching, oxygen and sleep apnea education and coaching and more. They also provided the startup funding for the COPD Patient Powered Research Network that many of you participate in and help govern.
Why am I bringing this all up now? Well, PCORI was authorized in the Affordable Care Act as a separate entity (not a government agency), and that authorization also set an expiration date of September 30, 2019, unless Congress reauthorizes it.
Today I was able to join 30+ patient advocacy organizations on Capitol Hill to meet with the 4 offices who will be leading a bill to reauthorize PCORI. We were able to tell them why PCORI is important to patients, why it matters that PCORI funds research answering questions that matter to our community, and why it is also important to maintain critical safeguards in PCORI's mandate such as not funding research that will do simple cost-effectiveness calculations without consideration to what patients value.
It was nice to be with others in the patient advocacy community and I look forward to talking more and gathering your feedback on how PCORI can be valuable for the COPD community as the reauthorization moves forward.