RTFCCR and Patvocates jointly boost implementation of effective patient involvement in collaborative cancer research
March 14, 2023
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.
These joint efforts are now described in a peer-reviewed article published by RTFCCR and Patvocates in the Journal of Research Involvement and Engagement. This article is a major milestone towards the realization of RTFCCR’s wish of making patient involvement the new norm for the conduct of global health-related research. It supports the adoption of effective patient involvement models and processes in collaborative research projects.
“This is beyond awesome! Setting a new standard for patient engagement in clinical research studies. I believe this is a model that could be implemented across a variety of disease types, and not just for cancer research. Congratulations – well done all involved!” comments Shawn Stephenson, Chairman of the Rising Tide Foundation for Clinical Cancer Research.
“The collaboration The teamwork with Rising Tide Foundation for Clinical Cancer Research is a lighthouse for a trustful and productive collaboration between philanthropic researchers funders and patient advocates. The guides are already helping researchers and patient organizations to move patient involvement in collaborative research projects from wishful thinking to reality today,” says Jan Geissler, founder and CEO of Patvocates, and cancer patient and patient advocate for more than 20 years. “RTFCCR has not only shown leadership in developing recommendations but has also proven their practical implementation in their own funding guidelines and grant review processes. With the publication of this journal article as well as the guides, RTFCCR and Patvocates have jointly moved their expertise into the public domain, so it can become general good practice in patient involvement in collaborative research.”
Patvocates is a consultancy, think tank, and social enterprise in the areas of patient advocacy and patient involvement. Patvocates’ goal is to design, establish, develop, and implement effective engagement frameworks, policies, processes, and projects. Based on decades of experience in patient advocacy and patient involvement, the Patvocates team supports patient organizations, healthcare institutions, and the private sector on effective patient involvement strategies and projects. Patvocates delivers strategic consultancy, training, moderation, project planning, and project implementation in the area of patient involvement. Patvocates is run by an experienced team of leading pan-European patient advocates with in-depth knowledge on healthcare systems, institutions, stakeholders, cultures, and the global patient community across very different disease areas.
About Rising Tide Foundation for Clinical Cancer Research
Rising Tide Foundation for Clinical Cancer Research is a charitable, non-profit organization established in 2010 and located in Schaffhausen, Switzerland. RTFCCR’s primary consideration in granting support is given to truly innovative, unique, patient-centered clinical research. The long-term ambition of the foundation is to optimize partnerships and attract the best in Phase I to Phase III clinical trials that aim to bring maximum patient benefit in the shortest time possible. With patients at the core of the mission, the foundation strives to support clinical trials resulting in the creation of less toxic therapeutic approaches, better disease burden management, earlier cancer detection, and innovative intervention strategies that will lead to increased quality of life and survival.