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Medable Inc., the software provider for decentralized clinical trials, has announced the launch of its Patient Advisory Council (PAC)-a nationwide network of advocates who will advise Medable and its biopharma customers on ways to improve patient access, experience, and outcomes in clinical trials.
The PAC is a network of patient advocates, advisors, and caregivers with diverse backgrounds in patient engagement and a strong understanding of patient preferences. The patient-led council is dedicated to improving clinical trial access and efficiency by embedding patient voices and perspectives into every facet of clinical trials, with the goal of bringing innovative, life-improving therapies to more patients at a faster pace.
The PAC will identify and prioritize potential hurdles for patients in the clinical trial process, particularly in the areas of trial burden, quality of life, and patient outcomes. Medable will then incorporate that perspective into its digital platform for decentralized trials-and share that patient insight with key stakeholders including healthcare providers, biopharma companies, and clinical research organizations.
Original PAC member, T.J. Sharpe, a melanoma cancer survivor and patient advocate, has been working closely with Medable leaders Jena Daniels (Director of Research) and Ingrid Oakley-Girvan (Senior Vice President of Research and Strategy) to develop the framework, initial guidelines, and best practices for how Medable can best incorporate the patient perspective.
“Embedding patient insights into product offerings and clinical trial development is slowly replacing ‘limited patient interaction’ as the model for patient engagement,” said Sharpe. “As a disruptor in the market, Medable has fully adopted this progressive concept to ensure their integrated platform includes patient input at every level.”
Patient advocate, and founder of One Rare, Jennifer McNary will serve as the Medable PAC Chair for 2020, providing leadership guidance and development to its growing membership.
“As the mother of three sons living with rare diseases, an educator, and a patient advocate with 15 years of experience in clinical trials, I am excited to chair Medable’s PAC,” said McNary. “Patient and caregiver insight are important to the development of real-world solutions that can drive innovation and research. 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 Joni Venticinque is a two-time breast cancer survivor and advocate who brings her first-hand experience and the experience of other patients to the PAC: “I joined Medable’s PAC to bring the patient perspective to research proposals and studies. By representing the collective views of survivors, patients, family members, and persons affected by cancer and other conditions, the PAC will aim to evaluate clinical trials and research study proposals for relevance to patient needs and concerns. By asking questions to clarify study design, risks, benefits, and rationale for the proposed research, patient advocates ensure clinical studies are patient-centered with outcomes relevant and meaningful to their care.”
Richie Kahn, a PAC member who was diagnosed with glaucoma last year, said, "As a health policy wonk by training, a clinical researcher by choice, and patient advocate by necessity, I came to the Medable PAC to learn from the patient community and incorporate patient perspective across the clinical trial landscape. 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."
“By giving patients and caregivers a much-needed voice in trial design and execution, life science companies can improve patient access, experience, and outcomes,” said Dr. Michelle Longmire, CEO & co-founder of Medable. “This is a unique opportunity for key stakeholders across the clinical trial landscape to work together and contribute their insights and experience to accelerate innovation. By integrating patient perspectives within our digital trials platform, we hope to offer patients a more human experience.”