Jill Feldman, Co-Founder at EGFR Resisters, shared on LinkedIn:
“Proud to present this poster at WCLC26. We talk a lot about the value of patient engagement in research, but we wanted to ask researchers directly: Does it actually make a difference?
We asked lung cancer researchers who had worked with patient research advocates whether it made a difference. 100% said the experience was beneficial, but only 23% said their budgets included compensation for patient advocates. Other barriers include difficulty finding appropriate advocates, uncertainty about advocate roles, and a lack of training or guidelines.
If we believe patient involvement strengthens research, then engagement can’t be an afterthought. It needs to be built in from the beginning, with clear roles, appropriate compensation, and better ways to connect researchers with advocates.
The goal is not simply to include patients in research. It is to make meaningful partnership a standard part of how research is done.
Learn more about these findings.
Grateful to Janet Freeman-Daily, Elda Railey, Upal Basu Roy, and the LUNGevity Foundation, International Association for the Study of Lung Cancer.”
To which, Amy Moor, Director of Patient Engagement and Advocacy at Summit Therapeutics, added:
“When I first started at GO2 for Lung Cancer and later at LUNGevity Foundation, Jill Feldman and Janet Freeman-Daily took me under their wing and taught me what patient-partnered research truly looks like and entails. They have been mentors and I am lucky to call them friends.
My work has been richer because of their guidance.”
You can also read: Gilberto Lopes: Key Insights From WCLC26.
