How to Work with Patient Advocacy Groups & Patients

It’s been awhile since I posted anything – sorry about that. Between excessive travel, new projects with new partners, and unexpected foot surgery, time marched on without me! I actually wrote 2 guest posts that I haven’t mentioned, though. Here is the first one:

Get Real with Patients and Their Advocacy Groups at Clinical Trials Arena. It summarizes a talk I gave at their April 2016 Clinical Operations in Oncology Conference.

People ask me how to work with patients and patient advocacy groups all the time.

Short answer: it depends on the disease, and what type of input is desired at different times. The post listed above offers some ideas.

Two more opportunities are also coming up quickly with eyeforpharma:

  1. Join Jamie Roberts from CTTI, Victoria Dibiaso from Genzyme and I on August 4th at 11a EST as we discuss how to Drive Value and make the Patient-Centric Trial a Reality. It’s free!
  2. I’ll also be speaking with many other patient advocates and companies at the Patient-Centered Clinical Trials conference October 10-11th. Be sure to say hi if you see me there.

There are more happenings in this area – look for future posts here on this topic!

Happy Summer…

Patients ARE the (end)Point of Clinical Trials

CT Arena post on Feb conference 2016Back in February, I spoke at the 2016 Arena International Outsourcing Clinical Trials West Coast Conference on “Patient Centricity” – a topic they gave me, along with some rather ambiguous objectives. I changed it to “Patients ARE the Endpoint” because it is time to get real about why the clinical trial industry exists in the first place.

Yu Ping Yen from Dance Biopharm joined me in the 30 minute session, and detailed diabetes patient interactions after I introduced patient-focused concepts. You can see from the slides how tough it was to present so much information in a 30 minute time slot!

Arena International also asked me to pen a summary about the session, which now resides on the Clinical Trials Arena site. Somewhat chagrined that the title still includes the centricity word, though! Come on, what does that mean, really? Slide1

My hope is that all patient representatives (whether they speak of their own experience or broaden their talks to cover endemic patient issues) speak clearly and succinctly about what patients need and want, and why we need to be in the development process from beginning to end. Maybe then, the clinical trial industry will focus on patients instead of just products.