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Our Experiences at the NHLBI’s COPD National Action Plan Meeting: Why the Clinical and Scientific Community Should Engage in the National Action Plan Implementation

Posted on December 16, 2019   |   
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This post was written by Dr. Stephanie LaBedz, pulmonologist and post-doctoral research fellow, and Ellen Stein, senior research specialist. Both authors represented the Breathe Chicago Center at the University of Illinois at Chicago at the November 13th meeting, “COPD National Action Plan: Tracking Our Progress,” hosted by the National Heart, Lung, and Blood Institute.

Perspectives from Stephanie LaBedz, MD

As a pulmonologist who cares for patients with COPD, I am all too familiar with the many challenges faced by patients with COPD, their caregivers, and the healthcare providers who strive to improve the lives of these patients. In addition, as a post-doctoral research fellow, I understand that despite COPD affecting over 16 million Americans and being the 4th leading cause of death in the United States, research efforts in COPD lag those of other health conditions. The NHBLI’s COPD National Action Plan was an important step in unifying the COPD community toward common goals of increasing COPD awareness and minimizing the burden of disease.

I attended the COPD National Action Plan: Tracking Our Progress meeting in November 2019 with the intent of representing the work of the Breathe Chicago Center and the University of Illinois at Chicago. Although I did have an opportunity to share some of our work, I left the meeting energized by the work others were undertaking as a part of a larger framework to improve the lives of those with COPD. The ideas and activities shared by other participants were innovative and inspiring. I look forward to collaborating in the future with those I met at the meeting to address the ongoing needs of the COPD community.

My favorite part of attending the COPD National Action Plan: Tracking Our Progress meeting was being introduced to the patient advocates who work closely with the COPD Foundation. Their dedication to helping others who are affected by COPD was impressive to say the least. Listening to their stories and experiences put into perspective that although there remains much to be done, the work we do has the potential to impact many lives of those suffering from COPD in a meaningful way.

Perspectives from EEllen Steinllen Stein, MS

As a newly minted epidemiologist and a newcomer to respiratory health research, I didn’t know what to expect when attending the NIH-NHLBI’s The COPD National Action Plan: Tracking Our Progress meeting last month. I had read the plan, familiarized myself with schedule of events, and discussed prior meetings with past attendees to get an idea of what it might be like. In spite of this, I was completely unprepared to meet so many warm, passionate individuals with a desire to collaborate and foment change.

What intrigued and inspired me most about the meeting was seeing a multidisciplinary group of dedicated individuals - clinicians, epidemiologists and other research professionals, policy advocates, patient advocates, etc. - all working to move the needle on this major health concern. I was amazed at the level of participation which every single person at the meeting offered during the event, and while their activities and roles were so diverse, they were all moving towards a common purpose.

Experiencing The COPD National Action Plan: Tracking Our Progress meeting not only introduced me to the extended family of COPD research and advocacy, but showed me the tremendous progress that has been made so far in the field. It also helped me see where my role and the research we do at Breathe Chicago Center fits into The COPD National Action Plan. As Breathe Chicago Center continues to work on research studies like the RELIANCE study, which aims to compare two medications that reduce severe COPD exacerbations, it will be critical for us to be able to communicate our findings with others in the field. This tool will allow us to share our work and see what others are doing as well so that we can disseminate information faster and move towards the goals of The COPD National Action Plan more efficiently. Participating in The COPD National Action Plan: Tracking Our Progress meeting, particularly in the development of the NIH-NHLBI’s new tool for tracking activities that support the plan, allowed us to voice our specific needs as the COPD community aims to increase communication and interconnectedness to further its goals. The work being done by the other participants is truly amazing, and I am proud to be a part of this wonderful community.

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  • I think that this shows how important our input as patients is to our care.
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