Lauren’s introductory talk on the Patient Panel Roche June 23 2020
Catia Fonseca of Roche asks Lauren: How innovation came about in the Cystic Fibrosis community?
Thank you Catia and thank you everyone for having me here today. I’m Lauren Brenneman, and I’m 41 year’s old and I have cystic fibrosis. In 2006, I joined a website called CysticFibrosis.com, a website that now has been around for 25 years, and it’s run by my business partner Jeanne Barnett. I joined to learn everything I possibly could to be in the be in the healthiest best shape to have a healthy pregnancy. What I immediately found out, was that I was not as healthy as my doctor helped me to believe I was. About a year later, I gave birth to a healthy baby boy and soon after found out the devastating news that he also had cystic fibrosis, despite my husband testing negative as a carrier. The short story to the development of this platform, well it’s an ongoing story. The sequence of events that got me there was that in 2008, a year after my son was born, I learned that there was a genetic modifier drug trial that was starting that would help not only me but my son. So, it was a “no brainer’ for my family, for me to participate in this. At the same time, I was moving from Philadelphia to Connecticut, so when I got there, I advocated to my doctor that I would like to go back to Philadelphia to participate in this clinical trial and actually I did for four years. In the total of my life, I actually moved around a lot, to nine different states. So, I saw at this time, that my data was really fragmented. It was all over the country, in all different pharmaceutical hands. This was MY DATA and I didn’t have access to it at least not easily, and the idea was born for a niche recruitment agency where patients could choose to be part of this because I had advocated to participate in this trial. How many other people wanted to participate in things that they didn’t know about? Right? Because the pharmaceutical companies can’t directly recruit, so the patient populations are really at the mercy of their doctors to hear about clinical trials oftentimes. At the same time too, I was realizing if I was to collect information like contact information and consent to be contacted, I would probably also collect things like mood, and diet, and exercise. Things that I was seeing on my own personal development were actually really advancing my overall health yet weren’t really being tracked. This would probably help create breakthroughs. Meanwhile Jeanne, my business partner now, was in the throes of running her very busy patient community and pharmaceutical companies and all kinds of health care companies were contacting her to gain access to the data of the CF community. She always insisted and I was a key opinion leader, that we be at the table that the patients be at the table and that the patients be compensated. She truly believes in the value of the patient. She really is a visionary and ahead of her time. So clearly our missions aligned and we were a natural fit to work together. So now we work on the development and the marketing of this platform that will allow patients to access, consent, and be compensated for sharing their data. We are looking for partners to collaborate with us and this is not just about CF. CF is the model community that just happens to have been around a lot longer than a lot of other disease advocacy groups. We are looking for people to contact us for a conversation about aligning with our mission