What does it truly mean to keep patients at the center of research — especially as technology rapidly reshapes the landscape? This question was asked of attendees at the opening keynote of the 2025 PCORI (Patient Centered Outcomes Research Institute) Annual Meeting, setting an important tone for the days ahead. The session, Real-World Innovation in Health Research: A Vision for the Future of Patient-Centered Comparative Effectiveness Research (CER), was moderated by Dr. Nakela Cook, Executive Director of PCORI, and featured Dr. Greg Merritt, Founder of Patient is Partner. The session explored how the principles of patient-centered research, which have guided PCORI’s work for the past 15 years, must continue to evolve in response to new tools, new challenges, and new partnership opportunities.

From Plain Language to Personalized Understanding

One of the most memorable takeaways from Dr. Merritt’s remarks was his call to move beyond traditional “plain language summaries.” For years, these summaries have been thought to be an essential step toward accessibility, but as Dr. Merritt pointed out, accessibility alone is no longer enough.

“We’re beyond plain language,” he said. “We’re at a place I call personalized plain language summaries.” He illustrated this with an example drawn from his own family: how research findings might be translated for his cousin, Dylan, a truck driver living with early-onset dementia. Instead of sending Dylan a plain language summary of a scientific abstract, Merritt imagined asking an AI tool to explain the findings in the language and imagery of a trucker’s life — connecting evidence to experience in a way that feels personal, relevant, and actionable.

In that moment, Merritt reframed the role of emerging technologies like generative AI, suggesting that these tools can help bridge the gap between complex data and real human understanding if, and only if, they are guided by empathy and patient partnership.

“We need to teach people how to prompt,” he said. “Explain this to me as a grandmother of seven who loves gardening — and make the analogy make sense.”

Innovation with Empathy

As the conversation turned to the future of AI in research, Merritt voiced both excitement and caution. He reflected on a time when a researcher once told him that patient partners might become unnecessary because large language models could simulate millions of patients’ voices. His reaction was immediate:

“I thought, uh-oh. That’s exactly what I mean when I talk about losing the humanity of research.”

It was a reminder that technology cannot replace lived experience. Data aggregation may offer scale, but it cannot replicate empathy, context, or authenticity. Merritt urged the audience to think about who is, and isn’t represented in AI training data, warning that without deliberate inclusion, innovation could widen existing inequities.

“If we don’t have patients involved as these tools are developed, we’ve lost from the beginning.”

This message resonates deeply with those of us who work in patient engagement and advocacy. At VOZ Advisors, we see daily how meaningful inclusion depends not only on intent but on structure — ensuring patients have defined roles, real influence, and are partners in scientific and technological innovation.  

Rethinking How We Communicate Impact

Merritt also challenged researchers to think differently about dissemination. Rather than viewing publication as the endpoint, he asked: What if we reimagined how evidence reaches people? Could results be shared through storytelling, art, or even performance?

“What if someone built a Broadway play about a clinical study?” he suggested. “What if that became the way we brought evidence to life?”

Behind the humor was a serious point — that real-world impact depends on how knowledge is shared, not just what is discovered. In a world saturated with information, creativity and empathy may be the new frontiers of communication.

Redefining Success

In closing, Merritt urged the research community to re-evaluate its measures of success. Traditional academic metrics — publications, grants, and impact factors — are not the same as impact on people’s lives.

“It matters less if your impact score is 4.72,” he said, “than if my grandmother is better because of your work.”

It was a powerful reminder that the ultimate goal of patient-centered research is not prestige, but progress — measured in quality of life, trust, and shared understanding.

A Shared Vision for the Future

Merritt ended with a hopeful prediction:

“One day, people will laugh that we ever did research without patient partners.”

That simple statement captured the aspiration at the heart of PCORI’s mission — and of the work we do at VOZ Advisors. As the health research ecosystem embraces new technologies and methodologies, the imperative remains the same: to center human experience at every stage of therapy development, from discovery through post-approval.

At VOZ Advisors, we share this vision. We help organizations design, build, and sustain partnerships with patients that are intentional, equitable, and built on trust. As innovation accelerates, our collective responsibility is to ensure that progress never outpaces people — and that the patient voice continues to guide the future of research.

– Emilio Amador, Director, Client Services at VOZ Advisors.