Following the wish of its Board of Directors, in 2020, Rising Tide Foundation for Clinical Cancer Research (RTFCCR) embraced an ambitious mission: boosting the implementation of patient involvement in cancer research. To make this mission a reality, RTFCCR joined forces with Patvocates, a specialized, patient-led consultancy and think tank on patient advocacy and patient engagement. Patvocates conducted a landscape assessment, interviewed leading experts on patient engagement in Europe and North America, and contributed with their own collective long-standing experience as patient advocates.
As a result, RTFCCR and Patvocates co-authored a set of guiding documents providing recommendations to public and private health research funders, academic grant applicants, and patient advocates on how to implement effective patient involvement in collaborative research projects and related funding processes.
Furthermore, three major initiatives were implemented at RTFCCR:
- The inclusion of the recommendations in funding guidelines for RTFCCR and other funding institutions;
- Patient input on the prioritization of research focus areas and in the topic selection for RTFCCR calls for proposals;
- Direct involvement of patient experts in the RTFCCR grant review process.