Hello, my name is Colin Edwards and I’m from Dublin, Ireland. I am a scientist who wants to improve the outcome for people with idiopathic pulmonary fibrosis (IPF).
A few years ago, I gave a presentation on clinical trials to a lung fibrosis patient group and I was really struck by now hungry the people were for good quality information on their condition and their desperate need for effective treatments. I resolved to work towards improving these outcomes to best of my abilities.
Two years ago, I met Eamonn Costello, CEO of patientMpower, by chance and was impressed by the work patientMpower was doing developing information tools for kidney transplant patients to help them manage their health post-transplant. We wondered if this approach could work for lung fibrosis patients. Eamonn and I took the idea to the local lung fibrosis patient advocacy group who encouraged us to develop the patientMpower app, guided us in our design work and helped us to evaluate and refine the application.
From our conversations with patients, it seems that the thing they value most is being able to see and record their spirometry measurements on a day-to-day basis at home. Up to now there have been few easy and reliable ways for patients to do this at home. Many patients only see their specialist clinics infrequently and they want and need to know how their lung function is doing between clinic visits.
Many patients have told us that they are delighted to see that their data is being fed into the digital biobank which we and they believe will be a very valuable tool in helping resource in fighting IPF.
Finally, I love my work at patientMpower as I feel very connected to the patients. We had a fantastic experience at the recent Pulmonary Fibrosis Foundation Summit. We met many patients and their families. I believe our work is very important and that patientMpower is already helping some people live better with pulmonary fibrosis. That is our goal and I hope that we will continue to improve the value that we bring to patients.