The path which led me to HealthiVibe started with Craig Lipset, Pfizer’s Global Head of R&D, interviewing me at Disruptive Innovations in 2012. That’s when the whole idea of “patient centered” clinical trials took root for me, becoming my passion. I figured if people were willing to listen to thoughts I had on how my clinical trial had impacted my life, then I had an obligation to share.
Last week I took part in a panel discussing this very topic at EyeForPharma’s Patient Centered Clinical Trials 2014 conference in Boston. Jack Barrette, CEO of WEGO Health, led us in a lively discussion. Besides myself, the panel included Jack Whalen (rare blood cancer patient), Alicia C. Staley (breast cancer survivor), and Lisa Gaultieri, Asst. Professor at Tuft’s University School of Medicine.
Everyone made great points about the need for patient-centricity in clinical trials once they are underway, but I also think getting them to join in the first place can use some attention.
I think clinical trials are desperately in need of a PR makeover. You’re never going to populate a trial with scary terms like “subject”, or “participant”. You need to reimagine the patient to be more of a partner, or even a customer.
Call them Beta Testers. Everyone wants a sneak peek at the new iPhone before it comes out, right?
Why wouldn’t patients want to get their hands on the latest, most cutting-edge, targeted therapies before the long wait for FDA approval? Putting a positive spin on anything can turn the tables. Rethinking not only how we design clinical trials to be more patient centered, but then how they are presented to potential volunteers can make all the difference.
A simple glossy tri-fold brochure, written in layman’s terms, showing the study site and smiling staff can go a long way to ease the fear that comes when reading the ream of copy paper otherwise known as the Informed Consent.
It’s all about presentation.
And that’s what I will be doing at Disruptive Innovations this week exactly two years after my onstage interview: helping Abbe Steel “present” our answer to patient-centricity, HealthiVibe LLC. The annual event to encourage disruptive thinking brought us together to do just that.
I believe so strongly in our mission to bring the patient voice to trial design at the protocol level that I’m willing to fly all the way back to Boston this week just to tell you about it.
So if you’re planning on attending Disruptive Innovations, be sure to come by and see me. But I won’t be on stage this time–I’ll be in a vendor booth.