Patient-Reported Outcomes: Design with the End in Mind
by Cynthia Grossman, Director, Science of Patient Input
There’s an exciting change underway in the biomedical research and development community.
Over the last several years, patient perspective data have become increasingly valued as evidence important to the way medical products are discovered, developed, and delivered. Rather than treating patients’ needs as an afterthought, patients’ priorities have begun to inform the products and discoveries that will best serve them. However, this paradigm change comes with its own set of challenges.
FasterCures recently published a white paper, “Patient-Reported Outcomes: Design with the End in Mind.” This publication was spurred by a workshop we organized to ask a multi-stakeholder group about the impact of patient-reported outcomes (PROs) and the challenges they face in gathering and utilizing them across the full spectrum, from early-stage research to care.
Our discussion with these experts made clear the benefits of PROs. Addressing unmet needs, facilitating better decision-making across every aspect of the R&D process, and aligning care priorities within diverse patient populations are all important objectives that PROs can help us reach more quickly.
To get there, we must overcome hurdles concerning the type of measures we are using, how we are gathering this data, and what resources we have to make sure they are reflected in decisions at the product level, the system level, and the level of the individual patient.
Our research on the issue has made clear that there is a lot of work to be done to ensure that PROs are utilized effectively and consistently throughout the entire R&D pipeline. I invite you to read our white paper and consider how you can help us push this important work forward.