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.
Webinar series
Partnering with Patients to Improve Clinical Trials
We would like to invite you to watch our webinar discussion on how patient involvement in research protocols, particularly for interventional clinical trials, leads to more robust trial designs with upfront patient buy-in. The outcome is a more patient-centered protocol that is aligned with the realities faced by the patient community. Patients can be brought into the design process in the earliest stages of trial design – including helping to identify key endpoints for trials.
Identifying Clinically Relevant Endpoints People Actually Care About
The first webinar features our grantee Dr. Shabbir Alibhai, professor of Medicine at the Princess Margaret Cancer Centre and University of Toronto; Janet Freeman-Daily, co-founder and president of the ROS1ders; and Winston Klaas, past chairman and associate director of Prostate Cancer Support Toronto. It is hosted by Dr. Upal Basu Roy, LUNGevity’s executive director of Research.
In the first of a three-part series, Rising Tide Foundation for Clinical Cancer Research has partnered with LUNGevity to understand the role people with cancer can play in developing clinical trials. Through panelist presentations and discussions, this video focuses on patient-centric endpoints, showcases this collaboration from the patient’s point of view, and shares the researcher’s perspective.
You can watch the entire conversation or use the timestamps below to find specific topics of interest.
Panelist Introductions: 0:00 – 3:59
- Dr. Shabbir Alibhai, professor of Medicine at the Princess Margaret Cancer Centre and University of Toronto;
- Janet Freeman-Daily, co-founder and president of the ROS1ders;
- Winston Klaas, past chairman and associate director of Prostate Cancer Support Toronto.
Researcher Insights: 4:00 – 19:50
Dr. Alibhai speaks about how his team has conducted three studies that involved patients in clinical trial design. He shares his experiences and learnings from working closely with patients to understand their perspectives.
Patient Insights: 19:43 – 31:30
Winston Klaas talks about being a patient and being part of the clinical trial design process. He shares his tips and key considerations for how researchers can engage with patients successfully.
Discussion: 31:30 – 55:49
In a discussion led by Janet Freeman-Daily, the panelists unearth important details about effective collaboration. Their conversation highlights key skills for researchers and for patients to use when successfully collaborating on research studies.
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.
Funding Opportunities
Open Call
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
Pre-application grants provide gap funding to support patient experts’ helping to develop grant applications/ protocols.
