The concept of patient engagement is trending in the United States, Europe and across the world. And at this year’s Drug Information Association annual meeting in Chicago, it was the talk of the town.
During a DIA panel on June 20, four experts discussed patient engagement initiatives, particularly as they relate to medicine development.
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Juan Garcia-Burgos, head of the European Medicines Agency’s public engagement department, neatly summarized one of the key takeaways that years of patient-focused efforts has taught: “I think what we have learned is that public perception matters,” he said.
Indeed it does. But alas, it’s not commonplace to standardize patient engagement efforts.
Why? In a poll conducted during the session, approximately half of the audience members said cultural barriers and international hurdles are the greatest challenges to patient-focused medicine development.
“Patient engagement is not new, but it didn’t happen systematically,” Jan Geissler, founder and managing director of Patvocates, said. Geissler is also the former director of the European Patients’ Academy.
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Going forward, he said, we still must push for regulators to change their procedures. “It’s [about] us changing our community to have more patient advocates,” Geissler said. “We need process knowledge about it.”
Anton Hoos, chief of medical for Amgen in Europe, agreed. Organizations across the board need to move together to involve patients in drug development, he said.
Theresa Mullin, director of the Office of Strategic Programs at the Center for Drug Evaluation and Research, shared a bit of insight on what the FDA is doing on the patient engagement front.
“A lot of work’s going on,” she said. “As we look at this at FDA, it’s very desirable to have a readily accessible repository of instruments and reference materials.”
Yet as Garcia-Burgos noted, “Engaging with authorities is only one aspect of patient engagement.”
Organizations have to have complete buy-in from all players to ensure success. “The driving force must be the belief that there’s value in involving patients,” Hoos pointed out. “Unless we have the sincerity and commitment to doing this long-term, it’s not going to work.”
The ideas shared by all four panelists are useful and thought-provoking. But after #DIA2017 draws to a close, attendees should search for ways to bring these insights to action in their own organizations.
Photo: PeopleImages, Getty Images
