My latest melanoma adventure has me in San Diego for back-to-back conferences over 10 days in two overlapping industries. It’s a long time to be away from the family, especially with a bit of the unknown hanging over us from the last scan – Tony Gwynn passing away from cancer the day I landed in Southern California was not the best omen to start the trip. The commitment was already in place and there was nothing to suggest my participation would alter treatments or my heath, so it was off to the land of 75 and sunny (with NO humidity!).
The Drug Information Association (DIA) is the global organization dedicated to the development and life cycle management of medical products – basically, the guys behind the scenes who help get a drug from the lab to the patient. DIA’s 50th Annual meeting brought together all of these businesses associated with pharmaceutical development process, and I got a chance to provide the patient perspective on what it’s like at the end of that life cycle. The convention focused less on the big pharma companies themselves and more on those who work with them — getting patients to enroll (a biggie), managing projects and documents, dealing with the FDA and other regulatory hurdles, etc.
Much like the panel discussion I wrote about from the SCOPE Summit in February, this talk had some similarities – Jamie Heywood was the conference keynote speaker, Christine Pierre moderated our session, and I even sat with Chris, another trial patient and panelist from SCOPE. The audience was smaller (we were just one track and spoke in front of about 125 people) and instead of trying to follow Jamie’s keynote, we were a dedicated session two days later.
The presentation went well, it seems. It’s kind of tough to judge if you are connecting with an audience, but there was a lot of participation in the Q&A, so someone must have found what we were saying interesting. It went so quickly that now I’m having a hard time remembering all of the questions. I fielded more questions than the other panelists; metastatic cancer apparently is the cleanup hitter in a lineup of clinical trial patients. There’s a highlight clip where I stutter “ya know” a bunch of times and talk a bit about clinical trial experience for Stage IV melanoma. I’m hoping to get my hands on some more extensive footage to give a better insight on how the participants educated each other with a pretty frank discussion on the difficulties in coupling patients and trials.
As much as the audience may have learned from myself and the other two panelists, I got to glean some insight on how the other side of this business thinks and views me, as the data point. No matter how many patient faces a trial presents, there will always be an undercurrent of statistics involved. It’s how trials are evaluated, how success or failure is judged, at least in the current health care world. The necessity of scientific method makes this unavoidable, and some of the discussion drifted away from our patient experiences, and towards industry problems with pushing through regulatory compliance. This flies in the face of why I was on that stage, and what Jamie talked about in his plenary presentation.
I heard two questions during the week that demonstrate how different the general industry mindset is from patient mindset, someone who wants to do everything possible to get better. The attitude is, partially, one of jumping through the necessary hoops to push a drug to market. A representative from the FDA posed this question to someone in the industry, “It is your study and design, why are you doing extra ‘stuff’ to be judged on?” Another presenter spoke of not collecting data you do not need to get your drug approved. If you listen to Jamie Heywood’s TED talk, the hope is to break that mindset and change the paradigm of how chronic or serious illness is approached.
Christine Pierre brought us patients to DIA to give the industry a look into what we go through finding, enrolling, and completing clinical trials. The DIA team chose Jamie, and his message of data modeling to advance medical personalization, to help shift the industry from regulatory compliance to rapid medical advancement. As Jamie put it (appropriately, since his speach coincided with the USA-Ghana match), it is much better to have more “shots on goal” when fighting disease by adding biomarkers and patient-sourced data. Giving patients like me a voice in the process of changing the way trials are structured can only help move towards that new world of personalized, patient-centric medicine.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »