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Patient research advocates bring their personal experience into the research process, helping studies ask questions that matter to people affected by lung cancer. A national survey, supported by LUNGevity and other partners, was presented by Jill Feldman, co-founder of EGFR Resisters, at the 2026 World Conference on Lung Cancer in Seoul, South Korea. This survey looked at how lung cancer researchers in the United States view patient research advocacy.
Key findings included:
- Among researchers who had worked with patient research advocates, 100% rated the experience as beneficial.
- Researchers reported that advocates helped make research more patient-centered and strengthened the incorporation of patient perspectives.
- Only 23% reported including a budget to compensate patient research advocate time.
The study revealed other common barriers to incorporating the patient perspective into research, including difficulty finding appropriate advocates, uncertainty about advocate roles, and a lack of training or guidelines. These results highlight the need for stronger funding support, help in matching researchers with advocates, advocate training, and clear institutional policies.
“Patient research advocates help ensure that lung cancer research is grounded in the real questions, priorities, and experiences of people living with the disease,” said Upal Basu Roy, PhD, MPH, Executive Director of LUNGevity Research. “This survey reinforces that researchers see the value of advocate engagement, but it also shows that good intentions are not enough. We need funding, guidance, and infrastructure so meaningful patient partnerships become the norm in lung cancer research.”
Takeaway and next steps: The findings support a stronger commitment from institutions and funders to compensate patient research advocates, make it easier for researchers to find appropriate advocate partners, and develop best-practice guidance for meaningful engagement.
Want to learn more about how patients and caregivers get involved in lung cancer research? Email Upal Basu Roy, PhD, MPH, LUNGevity’s Executive Director of Research at [email protected]