Patient perspectives: Meeting the wonderful “e-patient Dave”
At Antidote, matching individuals to clinical trials is our driving force — and one of the key ways we do this is by prioritizing our connection to patients. Understanding the real-world impact of our work allows us to continually improve our processes and approach clinical trial recruiting from a patient-centric perspective.
One patient we’ve had the honor of connecting with is Dave de Bronkart, otherwise known as e-patient Dave. Based in Boston, Dave has gone on an incredible journey to become one of the best-known patient advocates in the world after a devastating diagnosis of an advanced form of rare kidney cancer. To learn more about this life-changing condition, Dave conducted an online search that would eventually lead him to a strong patient community and the medical treatment that saved his life. Since then, Dave has traveled the world with a single mission: to help patients help themselves.
Patient-centricity in clinical trials is a passion of Dave’s, and during our chat, he shared his thoughts about how empowering patient communities can speed up the development of new treatments. Read on to learn more about his perspective.
The patient perspective on patient-centric clinical trials
For individuals with a rare, progressive disease, time is everything. A key quote from Dave is, “There is a time value of therapy, which may outweigh its certainty.” Time and risk are relative, and patients seeking a better quality of life may be more willing to experiment and take risks if they have exhausted their options for treatment. In many cases, they literally can't wait ten years until a promising new drug has been approved by the FDA.
He posits that by focusing on patient-centricity in clinical trials, it will be easier to develop ‘patient-centered outcomes.’ Patients are a valuable resource for designing the goals of a trial — understanding what participants view as important, the outcome they are hoping for, and what level of risk they are willing to endure can help sponsors develop protocols that speak more effectively to the population they are aiming to reach.
Creating patient-centric clinical trial protocols
While this may seem like a radical notion in the context of the way trial protocols are developed, there are many ways that organizations can ensure patient-centricity in trial design. Working with patient advocacy organizations and patient influencers can allow for insights that come directly from individuals that will be impacted the most by the protocol, and can inform inclusion and exclusion criteria that may be unnecessarily rigid. Additionally, a live protocol simulation can measure how patients react to a clinical trial design in a real setting, providing valuable feedback that can have a significant impact on the success of recruitment.
If you’d like to find out more about Dave, his website features links to his books, appearances, and blog articles. If you’re interested in participating in clinical trials to help research advance, click the button below to see what studies are currently recruiting in your area.