My Experience Improving Care Behind the Scenes

In the fall of 2017, I was asked to join the Advanced Lung Disease Guidelines Committee as a parent representative because of my work as a member of Community Voice. I was honored and said, “Yes!” I am so pleased I did, because my experience gave me great hope and valuable insight into the dedication that goes into improving cystic fibrosis care.

March 12, 2019 | 5 min read
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Carl Riedy
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At the time, I really knew nothing about clinical care guidelines committees or the critically important work they perform. Today, I do! And so, I would like to share some insights from my 15-month experience in the hopes that you, too, will become familiar with the work of these committees, develop a better understanding of their impact on improving and standardizing cystic fibrosis care, and take advantage of the opportunity to comment on draft manuscripts through programs like Community Voice.

It began with a day-long kickoff in October 2017. I found myself in a meeting with CF medical specialists from different universities, hospitals, and care centers representing a diverse range of disciplines -- from transplant surgery to pulmonology, social work, and pharmacy. The committee also included two adults with CF, one of whom was there in person and one of whom called in via video link. As the day progressed and various topics were discussed, I learned that the committee members had a long history with CF, were subject matter experts, respected each other's opinion, listened attentively, and knew improvements could and should be made. 

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Although I have been in a number of important high-level business meetings in my professional life, this one was unique. I came home feeling honored to be on the committee and told both my wife, Judy, and our son, Chad, that this was one of the most satisfying and energizing days I had spent in some time. It was so gratifying to see firsthand how so many individuals are driven to care for those with CF and advanced lung disease.

All recommendations for any clinical care guideline are based on the latest research, medical evidence, and consultation with experts on best practices. To meet this hurdle, three work groups were formed, and the hard work began. I was selected to serve with four other committee members on the work group that focused on improving symptom management and end-of-life planning. In a full committee meeting this past December, we reviewed over 30 recommendations, six of which were prepared by our work group. They are now under review for finalization.

For me, this was a true gift. I participated with a group of individuals driven by a single goal: to improve care for individuals with advanced lung disease. They appreciated the value that a parent can provide and were gracious enough to listen to my views.

Unlike so many other initiatives in which I have participated, there were no separate agendas. The objective was clear. From these individuals, all of whom volunteered their time, I learned so much about the complexities of advanced lung disease from a medical standpoint as well as the financial concerns and psychosocial behaviors involved. These factors not only impact the individuals with advanced lung disease and their families, but the lung transplantation teams, CF care teams, and the entire support system.

As a parent with a son who has faced the possibility of a lung transplant, I now have an even greater appreciation for his many challenges and the need for strong support systems. It has given me cause to learn more and to re-evaluate how I can be more helpful. I know my wife and I will be more engaged and better parents as our son and his family face this journey.

As I reflect on my experience, I only wish that every individual with CF, every parent, and every loved one could witness firsthand this type of a discussion. The knowledge, commitment, dedication, and passion of every committee member gave me great hope that these efforts and initiatives will go well beyond this particular discussion to those fighting CF and their families. I am confident that you, too, would share this same optimism.

These clinical care guideline committees, which have been convened to address a wide array of issues including lung transplantation, are only possible with the support of CF Foundation leadership, care center staff, and the resources dedicated to this effort. I know that this work, like so many other programs, will continue to improve the quality of care on multiple fronts, beyond what could be imagined today.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Carl recently retired from a 50-year career in housing policy, programs, development, and finance. He resides in Vienna, Va., with his wife, Judy, who he has been married to for 40 years. He and Judy raised three amazing children -- Chris, Chad (who has cystic fibrosis), and Cassandra -- all of whom are now married to wonderful spouses and have blessed them with five incredible grandchildren. Carl and his family have been involved with the Foundation for over 30 years. In addition to focusing his fundraising efforts on Chad's Great Strides team alongside his wife, Carl serves on the board of the Metro D.C. Chapter and is currently Outreach Chairman, focusing on care centers and advocacy efforts. Carl looks forward to dedicating more time to the Foundation's efforts in retirement while continuing to serve on a nonprofit community development board, participate in church ministries, and mentor young professionals. Follow Carl on Twitter.

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