How RTFCCR Patient Involvement In Research Influences Other Foundations
Since 2020, the Rising Tide Foundation for Clinical Cancer Research (RTFCCR) has embraced an ambitious mission: boosting the implementation of patient involvement in clinical cancer research within and beyond RTFCCR. Since then, we have collaborated closely with patients and patient organizations to adapt and standardize our processes, becoming even more patient-centered.
We started by joining forces with Patvocates, a specialized, patient-led consultancy and think tank on patient advocacy and patient engagement, to evaluate the status quo and the gaps in patient involvement in research. They 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, we implemented these major initiatives at RTFCCR:
- Patient input is mandatory in the prioritization of research focus areas and in the topic selection for RTFCCR calls for proposals;
- Patient experts are directly involved in the RTFCCR grant review process, with a patient expert representative at the RTFCCR Advisory Board and a patient reviewer for each application considered for funding.
Furthermore, we co-authored with Patvocates 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.
These RTFCCR-Patvocate joint efforts are now described in a peer-reviewed article published in the Journal of Research Involvement and Engagement. This article represents a major milestone towards the realization of our dream of making patient involvement the new norm for the conduct of global health-related research.
“The teamwork with Rising Tide Foundation for Clinical Cancer Research is a lighthouse for a trustful and productive collaboration between philanthropic 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 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.”
But our efforts do not stop here. Last June, a delegation of the team attended the American Society of Clinical Oncology (ASCO) conference in Chicago. We were excited about this year’s conference title “Partnering with Patients: The Cornerstone of Cancer Care and Research”.
We contributed to the ASCO conference by hosting a session at the patient advocate lounge called “Patients as Partners in Clinical Cancer Research – Global Perspectives”. During the session, various collaborators described how they partnered with RTFCCR to foster patient involvement in clinical cancer research.
Our Advisory Board member and Patient Advocate Annie Ellis provided her insights on working with and for RTFCCR, stressing the importance of patient involvement in research and the value of RTFCCR initiatives such as the pre-application grant.
Finally, Michael Kaplan shared his experience and collaboration in expanding our philanthropic scope through a recently launched RTFCCR program aimed at advancing patient-centered clinical cancer research in sub-Saharan Africa.
We are looking forward to continue working with our partners to involve patients as partners all the way throughout the cancer research journey!