Patient-Centered Value is Essential Within Health Care Research

During a panel discussion entitled “Beyond the Metrics: Defining Patient-Centered Value Research” at the Center for Innovation & Value Research 2025 Methods Summit held on March 19 in Washington, DC, the speakers emphasized the importance of engaging both patients and their caregivers meaningfully. The speakers provided a multi-stakeholder perspective to clarify what is considered patient-centered value in health care research while establishing principles and exploring perspectives on measuring patient value.

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The speakers explained that, traditionally, health care professionals utilize clinical trial data to support their regulatory interactions with patients. Often, regulators are interested in patient experience data; however, they emphasized that, recently, other stakeholders (eg, private payers, health and patient organizations, and health care providers) are garnering more interest in patient experience data. Although clinical trial data is beneficial in helping guide health care professionals and inform patients on potential treatments, there is a gap between collected data and value assessment within research.

Additionally, there are instances in which patients and their caregivers may not find value in certain outcomes that researchers are investigating during trials. “[As an example], 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.”

Speaker Asia Williams, MPH, program officer at the National Academy of Medicine, echoed this sentiment by underlining how patient-centered value research requires health care professionals to align with patient preferences at their core. She explained that it is often easy to focus on outcomes that are considered “narrow” or “traditional” by definition, but there is more than merely preventing or treating a disease itself.

“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,” said Williams. “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.”

Further, Carissa Doran, PhD, MPA, BSN, research scientist, health economics and outcomes, Northwell Health, proposed the idea of creating surveys for patients in which they can report specific end points or outcomes that are beneficial to them. This survey, which could be as simple as checking off boxes or answering questions on a tablet or form in-office, can create a better sense of patient centricity. In addition to collecting these patient responses, Doran said that this information should be passed along to health care providers, allowing them to better address their patients’ needs.

Similarly, Magdalena Harrington, PhD, senior director and team lead of patient-centered outcomes assessment at Pfizer, walked the panelists through interviews that are conducted throughout clinical trials. She explained that during trials, development often takes a long time, and patients that are engaged in research may or may not benefit from the investigational drug.

“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,” explained Harrington. “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.”

Above all, the speakers emphasized the need for transparency and accountability when practicing patient centricity. Collaboration with health care providers, insurers, and researchers is also essential, because having an overall effort among teams can create more support for patients. Additionally, patients should not be expected to be aware of everything; rather, health care professionals must educate patients.

“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.”

REFERENCE

Doran C, Harrington M, Williams A. Beyond the Metrics: Defining Patient-Centered Value Research. Presented at: Center for Innovation & Value Research 2025 Methods Summit; Washington, DC. March 19, 2025.