At the Center for Innovation & Value Research 2025 Methods Summit held on March 19 in Washington, DC, healthcare experts emphasized the critical importance of incorporating patient perspectives into medical research during a panel discussion titled "Beyond the Metrics: Defining Patient-Centered Value Research."
The panel highlighted a growing recognition that while clinical trial data remains essential for regulatory purposes, there exists a significant gap between collected data and meaningful value assessment from the patient perspective. This disconnect can result in research that fails to address outcomes that matter most to patients and their caregivers.
The Disconnect Between Research Metrics and Patient Priorities
One panelist shared a revealing conversation with a caregiver about clinical trial endpoints: "I had a conversation with a caregiver about the 6-minute walk test that was the end point [of the trial], and the caregiver said, 'That's not meaningful to me. What's meaningful is, 'Can my child still have use of 1 or 2 fingers to be able to use an electric wheelchair by himself?' That's a meaningful outcome, and that's where, in the case that we didn't measure that, we were measuring a six-minute walk test."
This example illustrates how traditional clinical metrics may not capture the outcomes that significantly impact patients' quality of life and daily functioning.
Asia Williams, MPH, program officer at the National Academy of Medicine, emphasized that patient-centered value research requires looking beyond narrow clinical definitions of disease treatment. "In reality, there's so much more to the context in which the patient exists, where they live, and eat, and work, and play, and pray," Williams explained. "So, when you are looking at value, you're really trying to look at the patient as a true expert in defining what health means for them, what it means [for them] to live a healthy life, and what they need to live a healthy life."
Innovative Approaches to Patient-Centered Research
The panelists proposed several practical approaches to enhance patient centricity in healthcare research. Carissa Doran, PhD, MPA, BSN, research scientist in health economics and outcomes at Northwell Health, suggested implementing patient surveys to identify specific endpoints that patients find valuable. These surveys could be integrated into clinical visits, with results shared with healthcare providers to better address patient needs.
Magdalena Harrington, PhD, senior director and team lead of patient-centered outcomes assessment at Pfizer, focused on the importance of providing immediate value to patients participating in clinical trials. "For me, patient-centered value research is what I can offer to patients in real time while they are participating in the research project, while they are contributing their experiences and their data," Harrington stated. "The patient-centered research and value of that research is that patients benefit from it while participating in it… It's difficult; it's not always possible, but that's something I aim towards when I'm thinking about research with patients."
Shifting Stakeholder Interests
The panel noted an evolving landscape where multiple stakeholders beyond regulators—including private payers, health and patient organizations, and healthcare providers—are increasingly interested in patient experience data. This shift presents both challenges and opportunities for implementing more patient-centered approaches to research and care delivery.
The Role of Healthcare Professionals in Patient Education
A key theme that emerged was the responsibility of healthcare professionals to educate patients about complex research processes rather than expecting patients to navigate these complexities independently. "We cannot be putting the burden on patients to educate themselves on research, which is complex. It should be us, the researchers and the providers, [who] people ask for input [and] ensure that we are helping patients understand the processes in a way that is easily understandable," emphasized one of the speakers.
Transparency and Collaboration
The experts unanimously stressed the importance of transparency and accountability in patient-centered research. Effective collaboration among healthcare providers, insurers, and researchers was identified as essential to creating comprehensive support systems for patients.
As healthcare continues to evolve toward more personalized approaches, this panel discussion highlights the growing recognition that meaningful research must incorporate patient perspectives at every stage—from study design and endpoint selection to data interpretation and implementation of findings in clinical practice.
