Establishing a Patient-Centered Research Community for Cystic Fibrosis

Our project for the Pipeline to Proposal was to establish a patient-centered
research community for cystic fibrosis, and for us, what was
even more important is to make it a patient-driven research community. As a patient, I’ve been involved in research studies whether they were
clinical, whether they were QI projects, but to actually have the opportunity to
drive this research project as a patient—this is
certainly my first experience driving the research from A to Z. I think the biggest gap in research has always been patient-centered researchers thought up as: eventually we’ll get the patient to the
center, and eventually our ideas will trickle down into the patient, and so we’ll call it patient-centered. This has given us an opportunity to be the creators of the experience and the structure by working with, most importantly, other
patients in the community. And then we choose who
to bring in and drive the research from the inside
out, instead of from the outside in. When we described the project to our patient community, the response was greater than I could
have ever imagined. I mean, our email had the highest click rate of any emails we’ve ever sent out. And so I think just the biggest thing I’ve
learned is you’ve got to be prepared, when you are showing something new to
your community, that the response could be even
greater than you anticipated. And now, what are you going to do with that
response? And and how are you harness that passion? And put other patients in the best
position to drive this research along with the community.

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