By: Kristina Lopienski, Product Marketing Manager, Forte Research Systems, Inc.
Patient advocacy is growing in importance, but resources are limited and the shift towards it is not happening fast enough. To talk about how we can accelerate the pace at which it is moving, Partnerships in Clinical Trials offered a keynote panel titled, “Patients as Partners – What are the Future Implications of Patient Opinion Leaders on Clinical Development?” moderated by Jayne Gershkowitz, Vice President, Patient & Professional Advocacy, Public Policy, Amicus Therapeutics. The panel featured two patients, Kaamilah Gilyard, a Lupus clinical trial participant and Alliance for Lupus Research advocate, and Jack Whelan, a cancer survivor and seven-time clinical trial participant.
The panel discussed how patient advocates can better the industry by discovering patients’ unmet needs, creating a feedback loop, designing better experiences for patients, and raising awareness for new clinical trials. It became obvious that the industry can still do a better job of leaning on patient advocacy groups and organizations that have patient advisory boards. They know their patients, including who’s involved and who’s doing what, and can be a valuable resource to point the industry in the right direction. Patient organizations can be the most trusted resource for disease-related information, even over physicians, and thus the key for successful enrollment in clinical studies.
Patients want more communication
Patients want to be involved and provide feedback. The industry must meet the patient where they are and have someone there to answer questions. They want clinical trial content in lay terms – from informed consent forms to study summaries – in language that they can understand. Patients want to speak and to be heard. Sponsors should find out what’s important to them and reflect that in trial design (and then provide them with the findings from the study). Also keeping cultural sensitivity in mind, it’s important to know how to talk to people in different ways and where to go to find them.
The patient perspective on why more people aren’t participating in clinical trials is simple: 95 percent don’t participate because they were never asked. In addition to physicians being disconnected, there are definitely still many myths and misconceptions around clinical studies. Often, people will think of them only as a last resort option, when in reality they’re the first resort for many people. Patients can be a very influential source for increasing awareness. It’s not uncommon for people to be willing to enroll in a trial after hearing a past trial volunteer speak about their experience (in both formal and informal settings).
An audience member expressed his disappointment in the number of empty seats in the room for this keynote panel. For a conference about partnerships, not enough people are considering the patient as a partner. Yet, it became apparent that now more than ever is the time for pharma to embrace patients and patient advocates. The partnerships between patients, physicians, and industry must be strengthened, so together they can collaborate for a cure.
About the Author: Kristina Lopienski is the Product Marketing Manager for Overture EDC at Forte Research Systems. In her role, she works to bring educational resources to clinical research professionals. She writes on a variety of topics affecting clinical trials on the Forte Clinical Research Blog. Kristina served as the guest blogger covering Partnerships in Clinical Trials 2015.