1:50 - 2:10 pmSunday, September 7
Plenary Hall
Patients as partners: The story of a citizen scientist
Plenary Hall
Patients as partners: The story of a citizen scientist
ePatient; Family Partner, Cincinnati Children's Hospital Medical Center; Blogger, 66 Roses
I have a 3 year old son who has cystic fibrosis, a progressive and fatal genetic disease that does not have a cure. Over the past 50 years, many new drugs and therapies have become available to patients... Read more

Description

I have a 3 year old son who has cystic fibrosis, a progressive and fatal genetic disease that does not have a cure. Over the past 50 years, many new drugs and therapies have become available to patients that have increased the life expectancy from adolescence well into adulthood. Sadly, we continue to lose friends and family members to this disease everyday. I feel I have a moral obligation to do everything in my power to find a cure for my son, and I refuse to let a broken systems, where research takes too long and costs too much, stand between me and finding what I need to keep my son alive and well. In 2012, I attended a conference where over 4000 doctors and researchers and other clinicians share for 3 days the latest and greatest in Cystic Fibrosis research. I drove my family from Cincinnati, Ohio to Orlando, FL and paid my way into the conference to hear everything that they were saying. I was told at that conference that patients aren't invited because they can often pose a distraction to the scientists who need to focus on the clinical and technical aspects of cystic fibrosis and can't be burdened by the emotional side that patients and parents often bring. I also heard, in nearly every presentation, that the missing piece to this puzzle, to finding the cure for this disease, is understanding what happens to patients between visits. That's when the light bulb turned on. Patients and caregivers have that information! We live that information day and night, every day of our lives. How can we gather and organize that information to make it useful for researchers? How can we work together, combining our knowledge, to cure this disease? I am prepared to show the value of PRO data in guiding treatment decisions (attached). I have examples that show the value of patients talking to other patients and a vision of how that can help to guide research. I am thinking outside of the box and working to change the scientific norms. I am finding ways to fit square pegs into round holes, creating previously nonexistent solutions through collaboration and partnership because my sons life and so many other lives depend on us figuring this out, and I don't have time to wait for someone else to do it. 

Erin Moore's work in the cystic fibrosis community began when her son was born in 2010. Her initial involvement was in fundraising and then she began working at the State Advocacy Chair for the Ohio Chapter of the Cystic Fibrosis Foundation. In 2012, Erin started working with Cincinnati Children's Hospital in their Pulmonary Department on quality improvement work, bringing all stakeholders to the table in designing systems and tools to better meet the needs of patients, clinicians and researchers to improve health and care in the cystic fibrosis community. Erin is a member of the Committee for Patient Engagement at the Cystic Fibrosis Foundation and works on the Committee for Patient & Clinician Engagement on the New York CDRN. She also leads the patient engagement work for the development of a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis. 

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