As part of our 2016 Patient Advocacy Summit, we’re excited to have Kent Thoelke, Executive Vice President, Scientific & Medical Affairs, Safety & Commercialization at PRA Health Sciences as one of our dedicated speakers. He will also be attending our Tribute to Champions of Hope. We were were able to get a preview of what attendees will learn from Thoelke’s presentation during a recent interview.
We all have strong ties that bond us to the rare disease community. Thoelke is no different.
“A very dear friend of mine passed away this year after an eight year battle with a very rare tumor type,” Thoelke explains. “We spent countless hours working with experts and searching the world for potential treatment options where none existed. We fought the system repeatedly to get her access to potentially lifesaving treatments and I witnessed first hand a system that wasn’t built to help a patient with an ultra-rare disease.”
This was his inspiration to get involved and change the way the system was run. Instead of implementing easy, immediate solutions though—he first came to understand that he had opened Pandora’s box.
“As we learn more and more about more prevalent diseases – we are starting to realize that what we had thought for years were homogenous diseases are actually a mass of different diseases – making virtually every disease a potential rare disease. We need to take all of the lessons we have learned from the treatment of rare diseases and start thinking about how we apply those to these emerging rare diseases. Cancer is a perfect example – prior to our understanding of the impact that molecular markers play in a persons ability to respond to cancer therapies we treated all tumors the same. Today with increasingly sensitive diagnostics we have essentially taken what was a common tumor type and created dozens of rare diseases within lung cancer.“
How do we handle the influx of diseases we now have to battle? Thoelke knows the value of patient participation in clinical trials. He feels the main obstacles that pharmaceuticals are facing when it comes down to involvement is really just a matter of patient education.
“The general public is relatively unaware of clinical trials and clinical research. The “guinea pig” perception continues to persist and that is a tremendous shame,” cites Thoelke. “The reality is that most patients should, at a minimum, be considering if a clinical trial is a viable part of their treatment options.”
For other patients, the end-of-the-line treatment idea doesn’t have to be a reality. Many patients are eligible to participate in trials as their first line of treatment. The problem? Most physicians don’t recommend it—as they also are unaware of the opportunities.
“The physician community is not well educated on clinical trials as an essential treatment option early on in a disease. We need to do a much better job educating both patients and physicians about the basic concepts of clinical trials. At the same time we need a better way to make information on potential trials available to patients and physicians.”
The answer to this, Thoelke says, is leveraging big data.
“With technology today, social media, search engine optimization, and patient communities — we are now in a position like never before to be able to connect directly to patients. The ability to mine patient data and connect patients with potential trials is remarkable. The ability to provide patient education electronically has changed the way we interact with patients. I have been a leader in the use of big data for over a decade – I have been yelling from the mountain tops for a long time that the key to the future of clinical trials will be our ability to leverage Big Data and data assets to connect the right patient with the right trials.
Join us during our 2016 Patient Advocacy Summit to hear Kent Thoelke’s full speech where he’ll be discussing the importance of patient participation in clinical trials and using big data and social media to connect patient communities and physcians with ongoing clinical trials.
What questions do you want to hear addressed at the summit?