The new patient advisory council (PAC) consists of patient advocates, advisors and caregivers from various backgrounds. The patient-led group is charged with improving access to clinical trials, as well as trial efficiency.
The goal is to amplify patient voices and perspectives, so that more therapies can be brought to more patients at an accelerated rate. The PAC’s mission includes pinpointing possible hurdles patients might face in clinical trials. The areas examined include trial burdens, quality of life, and participant outcomes.
Jena Daniels, director of research for Medable, is steering the council. She has been living with various autoimmune diseases since she was diagnosed at a very young age. As a result of her experience, she told Outsourcing-Pharma, she knows all too well about the obstacles and pain tied to living with such conditions.
“I can very much relate to the frustration around lack of access to information, and the limited access to being able to support others in a similar situation,” she said.
In previous positions, Daniels worked on projects at Harvard University and Stanford University dealing with children living with autism. She worked on various aspects of the studies, including design, implementation, collecting data and more.
“I realized one of my main roles was to be an advocate for those kids and their families,” she said. “I wasn’t just working on behalf of our study team and lab people, but on how to increase access for such patients.”
She told us staff at Medable, a company working to increase patient centricity and access, recognized a need to “get the patient's voice embedded into the DNA of everything we do.” The company put together a proposal to form the PAC, recruiting patients, advocates, physicians and other stakeholders to provide their unique perspectives.
Patient advocate and PAC chair for 2020 Jennifer McNary is the mother of three sons living with rare diseases and the founder of One Rare, a group rallying for young people with such conditions.
“Patient and caregiver insight is important to the development of real-world solutions that can drive innovation and research,” she said. “By bringing the patient voice into the clinical trial process, we can help create a better patient experience, increase engagement and address tougher-to-populate rare disease trials.”
PAC member and clinical research expert Richie Kahn was diagnosed with glaucoma last year. He describes himself as “a health policy wonk by training, a clinical researcher by choice, and patient advocate by necessity.”
“For years, patient-centricity was a hot topic in the industry but very little was actually being done. Medable's goal is to change all that by incorporating the patient voice and ultimately accelerating clinical trial timelines,” he said.
According to Medable, the company will take the information and perspectives provided by the PAC, then integrate that new knowledge into its digital platform geared toward decentralized trials.