The benefits of patient-reported outcomes (PROs) include addressing unmet needs, facilitating better decision-making across every aspect of the R&D process, and aligning care priorities with diverse patient populations. FasterCures executive director Tanisha Carino moderated a webinar on March 22, titled “Patient-Centered Measurement: How Close Are We?,” with experts representing government, research and patient groups tracking progress in integrating patients as partners in R&D.
Ellen Schultz, a senior researcher at American Institutes for Research (AIR) said patient-centered measurement is “driven by the patients’ expressed preferences, needs and values that inform progress toward better health, better care, and lower costs.”
The Michael J. Fox Foundation (MJFF) is leveraging patient data through Fox Insight, an online clinical study gathering a sample of people worldwide with and without Parkinson’s disease. “Patients are the real experts. They live with their conditions 24/7, and they have insights to share,” said Catherine Kopil, director of research partnerships at MJFF. Kopil recommended a “patient-centric model where stakeholder decisions are grounded in patient input.”
Paul Kluetz, acting associate director of patient outcomes in the Oncology Center of Excellence (OCE) at the U.S. Food and Drug Administration, noted the importance of continuity in measurement. The OCE’s Patient-Focused Drug Development initiative strives to assess the full patient experience, including improvements or declines in quality of life, and determine how stakeholders can use this information to their benefit.
Cynthia Grossman, director of science of patient input at FasterCures, said adoption of patient-centered PROs along with defining the return on investment and celebrating successes will help to advance the patient perspective in R&D.
For a recording of the webinar, click here.