Clinical Trials - My perspective as a Patient Advocate

Hi everybody!
I will be on the air next Monday September 14 at 5:00pm EST. CureTalk Blog Radio is a great forum I have served as a panelist to ask questions on but for this one I will be the speaker:

curetalks.org/event/rsvp/In-Conversation-with-your-Prostate-Cancer-Patient-Representative-/239/?upcoming=yes

The topic outline:
"This month's guest speaker will be Tony Crispino -- the patient representative to the Genitourinary Cancer Section of the Southwest Oncology Group (SWOG) and a long-time prostate cancer advocate, mentor, and support group leader.

Tony will talk about what a major clinical trials group like SWOG is, what it does, and how it does it (including its role in recent major trials for like the CHAARTED trial and pivotal trials for enzalutamide, radium-223, abiraterone acetate, etc.). He will discuss his role in that process; how a patient advocate is integrated into such a setting; and how he has been received by the research community. And he will address such matters as the training available; learning about evidence-based medicine; the funding of clinical trials; and some of the trials patients (and researchers) might like to see but (for various reasons) probably never will."


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A changing scenery.
It's been several years since I started doing things for the Feds and for the research community. I have learned a lot of things that has changed my views through the years and much of this is due to working with the researchers. I can honestly say that my perspectives that started out as the scared deer in the headlights just diagnosed with advanced prostate cancer to a patient that requires strong evidence and commitment to get it. Much has changed since that fateful day in 2006 in the prostate cancer industry. The way we screen, the ways we treat, the ways we don't treat, for example are not the same as 9 years ago. With the US Preventive Services Task Force calling on all screening for prostate cancer to end in 2009 with a draft recommendation, I witnessed a huge change in patient mentality, physician mentality, and even in the way trials are to be completed. While this talk will mostly be covering the representation of survivors role I took on, it also covers how you all can be great advocates in key research committees, lobbying, and support. Of course by being here you already have that ability to support and to mentor.

I hope to hear you Monday! This will be a more open CureTalk forum I am told for outside callers. I look forward to the perspectives and the questions.

Post Edited (Tony Crispino) : 9/8/2015 11:04:00 PM (GMT-6)

Hi Eagle!
I have been doing well. Same to you I hope. I still read here and I'll reply occasionally. But my PSA's keep coming back good and I have to watch my BP. After gaining weight to the 229 level while on HT, I am nearly 50 lbs off that pace these days at 183. (I encourage weight loss for those that need it. I feel so much better).

The value of this forum as a launch pad to the very interesting place I am in with the research community is everything. Without all these people talking and sharing I would have had a hard time 9 years ago. I won't forget it!

Take care, sir!

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