Good4Patients: DIA High Notes

Kudos to the Drug Information Association (DIA) for continuing to offer a Patient Engagement track at their annual meeting, which took place in Chicago last week. We thought we’d share some highlights below, to give you the flavor of the breadth and depth of perspectives from some of the thought leaders in this area.

Speaking of patient perspectives, we have also attached a newly-released Rx4good report on findings from a survey of 200 patient organization leaders about their views on the FDA and the role of patients in drug development. Enjoy!

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The High Notes from DIA

“There is no way back.  It is no longer the case that we question the value of patient engagement.  But, we need to make the process more efficient and ensure the independence of the patient perspective.”
—Juan Garcia-Burgos, Head of Public Engagement Department, EMA

“We need to move from a faith-based approach  where we are acting on faith when engaging patients, to making this the standard of how we do things.”
—Anne Beal, Senior VP, Chief Patient Officer and Global Head of Patient Centricity, Sanofi 

“Patient engagement is never going to rescue a poor drug.”
—Paul Kluetz, Associate Director for Patient Outcomes, OCE, FDA

“We need more trials that test the treatment vs. the protocol design.”
—Ronald Bartek, Co-Founder/Founding President, FARA

“This will not be one size fits all. We need to shift from the old way, which was paternalistic, to the new way, which is patient-centered. We know how to do it the old way. We’re just learning the new way. If we judge the new way by the old way of doing things, we could tank this.”
Kimberly McCleary, Managing Director, Faster Cures

“One-third of drug sponsor applicants are first-timers. We need good instruments and references for small companies so they can take advantage of the resources so they don’t have to reinvent them. We need to standardize the patient perspective in all the stages of development so there are shout-out points along the way.”
Theresa Mullin, Director, Office of Strategic Programs, CDER, FDA 

“You have to do it early. If you engage patients too late, it is hard to stop the ball rolling. It needs to be done well before the protocol is final.”
Jane Myles, Head, Operational Intelligence and Innovation, Genentech

“Our commitment needs to be serious, sincere and long-term. Unless we commit long term, it won’t work.”
Anton Hoos, Vice President and Medical Director, Europe, Amgen GmbH

Enjoy your holiday weekend!

Best,

The Rx4good Team

P.S. Feel free to forward this link to your colleagues, where they can download the survey report from the Rx4good website:
http://rx4good.com/patient-organizations-voice-views-priorities-fda-office-patient-affairs-download-now/