Aha! Moment on Patient Centricity

As part of the ‘Aha! Moment’ series on the Avoca Quality Consortium’s Member-only Online Community, Aha!, The Avoca Group interviewed three thought leaders about patient engagement. Our Executive Spotlight featured a podcast with Joseph Kim, Senior Advisor in Clinical Development Innovation at Eli Lilly, and we also spoke to Stephen Cutler, PhD, Chief Operating Officer at ICON, and Dr. Daniel Laheru, Co-Director of the Skip Viragh Center for Pancreas Cancer at the Johns Hopkins Sidney Kimmel Oncology Center.

The discussions took in a broad range of topics, from the philosophy underpinning trial sponsors’ approaches to patients, to the technologies that are reshaping how stakeholders interact. At the heart of the whole topic is a desire — and increasingly a commercial imperative — to improve bonds with patients. “Only 3% to 5% of patients have ever been in a clinical trial. That’s a horrendously low number, in my mind, given the benefits and advantages of clinical trials,” said Cutler.

Clinical trial sponsors have spent years considering how to improve these figures. There is no magic bullet, but there is now a belief that if the fundamentals of the sponsor-patient relationship improve, downstream operational benefits may follow. “Part of it is a philosophical shift in how we can inspire people to care. And those two words, ‘inspire’ and ‘care,’ are very important. We need to focus on a lot of our humanistic approaches versus technology and business processes,” Joe Kim said.

As Kim discussed in his podcast with Avoca, changing patient perspectives of clinical trials by involving them in the ongoing story of the research in which they participate, both before they commit and after their final site visit, is the first part of a two-step engagement process. The second, more widely discussed, component is the use of technology to remove barriers between motivated patients and clinical trials. Again, the move to use of technology to make it easier for patients to participate is partly philosophical.

“From a patient point of view, finding the most innovative and most promising studies is a full-time job,” Laheru said. Patients must quickly parse a lot of information, little of which is available in a layperson-friendly form, during a very stressful time. That they do so says a lot about the desire of patients to contribute to the greater good. “Patients are extremely generous of themselves,” said Laheru. Sponsors can do more to facilitate such generosity.

“I think we put together very onerous protocols,” Cutler said. Today, use of adaptive clinical trial designs and wearable technologies can reduce the frequency of site visits, lowering the burden of participation, and electronic informed consent can make it easier for patients to understand what a study entails. “We really should be able to, in many cases, reduce the burden of the clinical trial on a patient, so it becomes much more a part of their daily life,” Cutler said.

The ideas and technologies needed to enact new philosophical and technological approaches to the patient relationship are available today. Part of the challenge now is to work through the real and perceived barriers to change, starting by taking a look at our own operations. “Let’s get really good at enhancing the uptake of technology for our own business. When we do that, then we can start to really think about how the user experience is for patients,” Kim stated in his podcast.