The patient experience was once locked into an old, paternalistic model: The doctor - and the whole healthcare industry - told the patient what to do, claimed the role of protector and was presumed to know best.
No longer, said Deirdre BeVard, CSL Behring’s Senior Vice President for Research and Development Strategic Operations.
“The patient is the expert in their disease,” she said.
The evolving role of the patient will be front and center when BeVard appears this week at a Healthcare Businesswomen’s Association panel in Wayne, Pennsylvania to discuss the future of patient engagement. She’ll participate alongside panelists, including Columbia University professor and author Francoise Simon. CSL Behring, the world’s fifth largest biotech company, makes medicine for people who have rare and serious diseases, such as hemophilia and primary immune deficiency.
Patients still need the expertise doctors and healthcare teams can provide, but the patient’s role is changing, BeVard said. Technology helped light the spark. Patients have unprecedented access to information and to each other, thanks to the Internet, social media and other platforms that enable patients to connect. This inspired the modern age of patient engagement, which gives patients a voice in the way they receive healthcare and in the way new therapeutics are developed. But there’s more to be done, BeVard said. For instance, it remains difficult even for savvy, educated patients to get information about clinical trials.
Looking to make “patient engagement” more than a buzzword, CSL Behring wants to use technology to build a partnership with patients, she said. That means inviting patients into the process, rather than giving them a finished product to respond after the fact. Toward that aim, CSL Behring recently involved sickle cell disease patients in the design of an augmented reality app that will explain an upcoming clinical trial, BeVard said.
The company didn’t design the sickle cell disease trial app in a vacuum and then cross its fingers that patients would like it. Instead, patients guided the design, including choosing the avatar and the voice patients will hear in the immersive, augmented reality experience.
The value of that level of engagement “seems so obvious but it’s not commonly practiced,” BeVard said.
It’s especially critical to partner with patients on a gene therapy trial because gene therapy requires a heightened level of commitment from the patient. The patient’s own cells are removed, altered and then returned to the patient in the hope of providing a therapy that delivers a lasting result. The clinical trial app will augment, not replace, existing tools for explaining clinical trials and gaining consent, BeVard said.
The agenda for the September 19 panel also will include emerging trends in patient engagement technology, barriers to engagement and the ever-present topic of data. BeVard said one hot topic is who owns patient data and how will it be used across the healthcare environment and in the development of new treatments?
Fellow panelist Simon coauthored a book called “Managing Biotechnology: From Science to Market in the Digital Age.” A summary says the age of information technology presents both challenges and opportunities. To capitalize, leaders will have to “adopt new business models, develop new digital and data capabilities and partner with innovators and payers worldwide.”
The HBA panel on Thursday, which is open to members and guests, begins at 5:30 at Capgemini Invent in Wayne, not far from CSL Behring’s campus in King of Prussia, Pennsylvania.