Search

The inclusion of patient advocates in basic cancer research has emerged as a valuable practice to ensure research is intentional, to support effective communication with broader audiences, and to directly connect researchers with those whom they are striving to help. Despite this value, many researchers do not work with patient advocates. To understand why and build a roadmap for more engagement in the future, we hosted a workshop with patient advocates and research scientists then presented findings and discussed further at an international conference. We acknowledged four main barriers: 1) It is not clear to everyone why patient advocates should be included in research, 2) Researchers are worried about saying the wrong thing, 3) Researchers do not know where to meet patient advocates, and 4) Researchers do not know how to include patient advocates in research. We identified best practices from various organizations and opportunities to overcome these barriers in the short- and long-term. This is the first time a multi-stakeholder group has come together to provide ways to support research scientists with overcoming barriers to regularly working with patient advocates. Ultimately, these relationships will improve cancer research and more quickly accomplish our collective goal of improving lives of those who have been diagnosed with cancer. Citation Format: Hillary Stires, Igor Bado, Thelma Brown, Martha Carlson, Isaac S. Chan, Gloria V. Echeverria, Andrew J. Ewald, Carla Lloyd, Julia Maues, Steffi Oesterreich, Robert N. Riter, Kelly Shanahan, Alana L. Welm, Josh Newby. A framework for research scientists to include patient advocates in cancer research [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2022; 2022 Apr 8-13. Philadelphia (PA): AACR; Cancer Res 2022;82(12_Suppl):Abstract nr 1014.