Plenary - More than a Seat at the Table: Creating a Culture of Patient Engagement
How can researchers better meet patient needs?
Perfetto's opening talk, "Pushing for Change is Personal," set the stage for a discussion of patient engagement moderated by Freda Lewis-Hall, executive vice president and chief medical officer at Pfizer, who recalled something a patient advocate once said that stuck with her: "We've been talking about patient engagement for twenty years. When are we going to get married?" The quip underscores a serious problem facing the health care community, from clinicians to patient advocacy groups to regulatory agencies, all of whom were represented on stage: Have we made any progress in engaging patients more fully in their care?
Deborah Brooks noted that because her organization, the Michael J. Fox Foundation for Parkinson's Research, was founded by a patient, patient centricity has been at the heart of the group's mission, but there is still plenty of work to do. Brooks said more must be done to make patients stakeholders in the research process. "By bringing patient capital into the process, we'll have a much different risk-reward profile than what we can achieve from other funders, which will give us a different, more patient-centered focus," she said
Duke University cardiologist Adrian Hernandez acknowledged the need for integrating patient perspectives into research, because otherwise clinicians tend to offer "Ivory Tower solutions." He told a story about how he and his colleagues were developing a study of stroke patients, and momentum stalled because the clinicians couldn't agree on the scope of study. Eventually someone suggested they should ask stroke victims what they cared about, an "ah-ha" moment that helped the team recognize that their interests as researchers were not the patients' interests. "Survival was important to them," Hernandez said. "But it wasn't as important as their time at home. This required us to create an entirely new outcome, which drove our statisticians crazy, but that's what the patients wanted."
Putting patient perspectives into practice
Yet, as Julie Fleshman reminded the audience, we haven't come as far as many have hoped. As the president and CEO of the Pancreatic Cancer Action Network, Fleshman's interest in patient engagement dates back to her father's pancreatic cancer diagnosis 16 years ago. He would die four months later. Ever since, Fleshman has focused on bringing pancreatic cancer patients together and advocating on their behalf, but she concedes that the results have been mixed. Another member of her family was recently diagnosed with pancreatic cancer, but because of inherent problems in the health care system, he had to wait four weeks for treatment. "He died last Saturday, because it took too long," Fleshman said. "So after 16 years, I wonder how much progress we've made."
It's clear that while the health care community has made strides, structural, cultural and regulatory barriers remain. That's partly because as Julie Gerberding noted, most health care organizations -- including pharmaceutical companies like Merck, where she is chief patient officer, among other roles -- were built around the physician, not the patient. "This idea about what the patient needs seems obvious, but we're not built for it," Gerberding said. She noted that the sense of urgency at companies like Merck to change their focus is great, but that it requires a change in culture, which is extraordinarily difficult to achieve.
Shining a light on data
Hernandez also said culture change is needed, adding that the regulatory and privacy framework that surrounds patient data prohibits full patient engagement. "We need to give patients data, so that they can share it and link it to their treatment," he said. "But we've created all these walls around the data on behalf of protecting the patients' security."
On the point of data, Kathryn O'Callaghan, the FDA's acting assistant director for strategic programs, said that the information collected from patient registries offers great promise for expanding patient engagement, in particular because of the way they capture the "diversity of patient experience." Patient registries compile data on people with specific conditions, creating a central database that clinicians and researchers can access to develop more patient-centric treatments and solutions based on real-world data. O'Callaghan also reminded the audience that patient centricity should also apply to medical devices, not just treatments and drugs, and her team is focused on medtech, as well. "We work with the medical-device industry and patients to incorporate patient input at design stage, so that we can design a better device from the start."
Moving the needle
The panelists also identified other challenges to more fully incorporating the patient experience into health care. Gerberding's role at Merck gives her a clear window into barriers faced by the pharmaceutical industry, and a big one is too few patient volunteers for clinical trials. "We need more targets," she said. "If we had more, I guarantee we'll find the drugs. But we need something to work with." And Fleshman noted the trials themselves need to be designed around patients, requiring another industry shift. "Finding the right trial for the patient, rather than the patient for the trial," she said.
Of course, the purpose of greater patient engagement is to improve treatment and outcomes. When Lewis-Hall asked for a "drop the mic" moment with regard to patient centricity, Brooks focused on moving solutions for Parkinson's disease beyond treating symptoms: "We need to break into disease modifying," she said. "We're in the middle of a revolution in genetics and we have a whole group of targets illuminated. We now need to pair those new targets with patient tests."
And discussing her area of work, Fleshman said simply, "survival rates for pancreatic cancer need to change. We need to move the needle."