Patient Involvement in Research
Throughout the website, we use the Patient-Centered Outcomes Research Institute (PCORI)’s definition of patient partners, which includes patients (those with lived experience), family members, caregivers, and the organizations that are representative of the population of interest in a particular study.
Our ambition: The importance and merits of patient involvement in research are commonly acknowledged. When patients are involved, everyone benefits, because it ensures clinical and medical research work is performed more effectively and advances the delivery of what patients really need. This can only be achieved based on the collaborative identification and understanding of patients’ unmet needs. Receiving patient input throughout the design, implementation, and evaluation of clinical trials helps improve the discovery, development, and evaluation of new treatments. The process of creating these recommendations has been published at the in the journal, Research Involvement and Engagement.
Our guidance to the application requirements are divided in:
Step 1: Pre-application grant
These small grants are to close the funding gap for patient experts to provide input to the development of a grant application/protocol. We are aiming at supporting patient organizations during this early phase with a budget. The budget should be planned to cover travel costs to preparatory meetings and the work time invested by staff or patient experts.. For more information, please refer to the pre-application grant guidelines.
Step 2: Choice of model of Patient Involvement in research projects
Applicants will be asked to provide a detailed explanation justifying the patient role selected for the project. Please refer to our description of patient roles in our funding guidelines.
Step 3: Patient involvement planning checklist
This checklist contains some important Patient Engagement points to be considered in the application phase, during the implementation of the project, and beyond. For more information, please refer to our funding guidelines.
Step 4: Completing the Patient Involvement Plan template
The plan should describe Patient Involvement processes during both the generation of the project application and the implementation of your project. It describes engagement, provides a clear description of the expected outputs and how patient input will be processed and incorporated. Please download the plan template here.
Step 5: Review of applications by patient partners
Beside the Patient Involvement Plan, a set of questions will be asked to give the patient partners reviewing each application a clearer picture of what patient needs are being addressed and how. Please download the questions here and carefully address them in your application.
Patient Involvement Materials
RTFCCR funding guidelines
DIA considerations guide to implementing patient-centric initiatives in health care product development
Recommendations on patient involvement for funding institutions
Recommendations on patient involvement for applicants of collaborative research grants
Recommendation for patient organizations and patient advocates on their involvement in collaborative research projects
Empfehlungen Patientenorganisationen und Patientenvertreter zur Beteiligung an kollaborativen Forschungsprojekten
Adopting recommendations for implementing patient involvement in cancer research a funder’s approach
The Rising Tide Foundation and Patvocates have jointly developed guidance documents to support public and private health research funding institutions, research teams, and patient organizations with recommendations on organizational models, potential patient community contributions, checklists, and templates that support patient involvement in the generation of calls for proposals, the preparation and review of grant applications, and the implementation of research projects.
These recommendations are based on patient engagement models and methodologies established by leading collaborative initiatives, such as EUPATI, PFMD, PARADIGM and INVOLVE; interviews of patient engagement experts in patient organizations, funding institutions, regulatory authorities and academic institutions in the USA and Europe; as well as practical experience of patient advocates in the Patvocates team.
We accept letter of intent (LOIs) all year round and do not have specific deadlines. Once you have submitted your LOI, you will receive further information regarding timing and next steps.
Pre-application grants provide gap funding to support patient experts’ helping to develop grant applications/ protocols.