Two weeks ago I went to the Partnering For Cures (Nov. 13 – 15) conference at the Grand Hyatt in New York. After the experience, it is almost painful to admit that this was my first time attending. Developed by Faster Cures and the Milken Institute, the conference (now in existence for over eight years) brings together nearly 1,000 leaders from across the research ecosystem. The event’s goal is to forge partnerships dedicated to reducing death and suffering. And while I have attended other conferences that preach partnering, this conference, for some reason, felt distinctly different.
Like many other conferences, it began with networking and was formally kicked off by a patient advocate presentation. Also similar to other conferences it included well-rounded panels with high-caliber participants. So what makes Partnering For Cures distinctly different? Is it the fact that the initiative is being driven by a billionaire (i.e., Mike Milken) with a vision for positively disrupting the status quo, as well as a penchant for having successfully done so? Could it be an expectation that the material will be top shelf, and thus why so many conference organizers (from other shows) not only attend Partnering For Cures, but share it as being one of their favorites (even amongst their own offerings)? Yes and yes. But the differences don’t stop there.
In fact, what I thought was the biggest differentiator — and real value —of this show, was the breadth of attendees, especially as it pertained to networking. At biopharmaceutical conferences built around a specific discipline (e.g., manufacturing, clinical), most networking conversations focus on discipline expertise. But because “Partnering” succeeds in bringing together a wider range of potential collaborators, networkers have to find a common ground all on their own.
For example, at the first networking activity I met David Shulkin, whose name badge listed him as working for the U.S. Department of Veterans Affairs. I admit, I didn’t recognize his name at first, but I quickly realized that this was the Under Secretary of Health for the U.S. Department of Veterans Affairs, a man who had been appointed by the President and who had suffered a number of challenges this past year. During our conversation, we were joined by Bill Fair, director of life sciences at the Lake Nona Medical City. Fair explained about Orlando Florida’s medical city — a 7,000-acre community that is already home to the University of Central Florida’s College of Medicine, Nemours Children’s Hospital, the Sanford-Burnham Medical Institute, and the future Orlando VA Medical Center. The medical city is expected to have created more than 30,000 jobs and bring in $7.6 billion in annual economic activity. These are just two examples of the diverse group of people this event seems to bring together.
Breakfast Roundtable Discussions — More Than A Point Of Differentiation
On Monday and Tuesday the conference began with breakfast roundtable discussions, featuring 11 and 13 discussion topics respectively. On day one I selected the session “Big Data: Connecting The Dots” and sat next to Jennifer King, Ph.D., who worked for an advocacy organization. Soon we were joined by two academic researchers (Rick Silva, Ph.D., from the University of Arizona, and Thelma Tennant, Ph.D., from the University of Chicago), a clinical cancer research director (Ian Walker, Ph.D., from Cancer Research UK), and a senior director of client digital health strategy and value (Ravi Ramachandran, Ph.D., from patientslikeme). Listening to these experts share their challenges (e.g., the desire for standard Big Data nomenclature) and best practices (e.g., the University of Chicago’s Genomic Data Commons project), I soon learn that one of the most successful healthcare innovations for 2016 isn’t some whiz-bang technology, but an app called Pokémon GO. According to these Big Data experts, this app caused people to get out and walk more often. One of the challenges faced by researchers wanting to collect Big Data is how to get people to want to do so on a consistent basis. A lesson learned from the Pokémon GO phenomenon is that people participated because it was fun. The group discussed different ways of getting patients to want to collect their data, while not suffering from another lesson learned from Pokémon GO — people quickly losing interest. How can we get patients to want to collect their own data, while preventing them from quickly losing interest? While we didn’t arrive at one simple solution, significant networking was conducted, and I imagine the exchange of ideas will continue thanks to the exchange of business cards.
Should Patients Have More Than Just A Seat At The R&D Table?
Beyond the diversity of attendees, I also enjoyed the educational content, as well as the caliber of speakers this conference brings together. One of my favorite sessions was “More Than A Seat At The Table: Creating A Culture Of Patient Engagement.” Moderated by Pfizer’s Freda Lewis-Hall, panel participants included Deborah Brooks (The Michael J. Fox Foundation for Parkinson’s Research), Julie Fleshman, J.D., (Pancreatic Cancer Action Network), Julie Gerberding, M.D., (Merck), Adrian Hernandez, M.D., (Duke University School of Medicine), and Kathryn O’Callaghan (FDA).
During the discussion, all of the speakers shared personal experiences of working collaboratively with patients. And while all had excellent words of wisdoms, for some reason I zeroed in on what Dr. Hernandez had to say. “In some ways I’m part of the problem, in terms of being part of these ‘ivory-tower’ institutions,” the cardiologist admitted. His story started a number of years ago when he and his Duke colleagues began thinking about developing a study involving stroke patients. They convened a bunch of experts to determine what should be the appropriate outcomes for such patients, but couldn’t come to agreement. So they decided to ask some stroke survivors because, “Maybe they actually know what they care about.” Dr. Hernandez shared that the experts presented to surviving stroke patients a list of outcomes deemed important. “They basically told us we had it completely wrong,” he admitted. “There were certain areas that we were interested in studying that actually didn’t matter to them [patients]. The outcomes we were focused on, such as survival, were important, but what was more important [to the patient] was time at home.” The group ended up putting together a new outcome (i.e., home time) that really hadn’t been studied well. Hernandez shared that the decision to move forward with this outcome drove the statisticians’ nuts because it was not going to be an easy to analyze. But the story doesn’t end there.
“We brought some of our patient partners to Duke for a big research conference,” he shared. During a panel discussion he asked a patient who had travelled from Buffalo, why she would make the journey. The patient responded that when she had her stroke she was “interrogated” by the cardiologist as to why she wasn’t compliant. “Maybe I was compliant, but maybe the drug that you prescribed didn’t work for me,” she said. Her question to the cardiologist was, “Why aren’t you trying to help me instead of interrogating me?” According to Hernandez, she stated during the conference that her number one problem was all of the cardiologists. “That got everyone’s attention,” he said. “As we’ve gone forward at Duke, we’ve incorporated patients at the very beginning.”
This session was my favorite because it clearly pointed out why involving patients in research design goes beyond being just commonsensical. For years the healthcare industry has designed clinical trials at the convenience of the site and the investigators, with patients being glaringly absent from the clinical trial planning conversation. As the goal is to develop products that will eventually serve patients, why then does it seem as though the drug development process serves everyone but? If we want better outcomes and better clinical trials, perhaps the healthcare industry should first focus on healing itself, with input from patients.