– our focus areas
To focus our efforts and increase our impact, we have designed two umbrella focus areas under the themes Improved Patient Outcomes and Science of Early Detection and Intervention.
Patient Engagement in Research
Throughout this website, we have adopted the definition of patient partners as described by the Patient-Centered Outcomes Research Institute (PCORI): It 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.
Our guidance to the application requirements are divided in:
1 | A checklist to help applicants plan Patient Engagement in their research project
This checklist contains some important Patient Engagement points to be considered in the application phase, during the implementation of the project, and beyond.
- Patient Engagement is planned across the entire project lifecycle
- The Patient Engagement model is selected (please refer to our Funding Guidelines)
- The appropriate Patient Partners are involved early in formulating the concept and hypothesis
- The budget for Patient Engagement activities and Patient Partner compensation is determined for the Patient Engagement Plan and the overall grant budget request
- Assessment of trial participant needs by Patient Partners is included
- Adaptation of trial and procedures where necessary to meet the needs of trial participants
- Patient Engagement impact assessment is made at the mid-point and end of the project
2 | Guidance on how to choose a Patient Engagement model in a research project
Research teams should carefully consider the activities that Patient Partners could undertake across the whole project lifecycle. Short-term activities are easy to define upfront, but it is more challenging to think about sustained involvement across the entire project.
In the full application, 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.
3 | Instructions on how to complete the Patient Engagement Plan template
The plan should describe Patient Engagement processes during both the generation of the project application and the implementation of your project. It describes engagement – for example, how you engaged with the patient community when your research question was defined, while the proposal was being written, when it was submitted and resubmitted, and which Patient Engagement model you chose for the implementation of your project.
When developing your project budget, please ensure that adequate and realistic resources for Patient Engagement are reflected in the Patient Engagement plan and the overall grant budget request. This could include the appropriate budget for work time, staff, or contractors in patient organizations, as well as project-related pass-through costs such as travel expenses and meeting venue costs.
Please use the Patient Engagement Plan template
4 | Questions that will be used by a patient reviewer as part of the evaluation
As the patient expert reviewer will be using these questions to evaluate Patient Engagement in your application, please ensure they are adequately addressed for all Patient Engagement activities proposed in the project.
1. How have you assessed your patients' needs, goals, concerns, or preferences when writing the application?
2. How were Patient Partners involved in formulating the research question?
3. How were Patient Partners involved in the design of the application and project?
4. Which patient role have you selected? Please provide a detailed explanation to justify this choice.
5. Is meaningful engagement of patients appropriately supported and resourced?
6. How will you evaluate the relevance of the clinical trial's results to patients?
7. How will you evaluate the patients' acceptance and relevance of the project outcomes?
8. How will the patient community be involved in the dissemination of the project results?
5 | Our ambition: Patient Engagement in research as the new norm for Rising Tide Foundation and beyond
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.
Recommendations on patient involvement in collaborative cancer research funding and projects
The Rising Tide Foundation and Patvocates have jointly developed guidance documents to support public and private health research funding institutions, research teams and patient organisations with recommendations on organisational models, potential patient community contributions, checklists and templates in order to involve the patient community in the generation of calls for proposals, the preparation and review of grant applications, and the implementation of research projects.
The recommendations are based on patient engagement models and methodologies established by leading collaborative initiatives e.g. EUPATI, PFMD, PARADIGM and INVOLVE, interviews of patient engagement experts in patient organisations, funding institutions, regulatory authorities and academic institutions in the USA and Europe, as well as practical experience of patient advocates in the Patvocates team.
Please find more information about the Patient Engagement initiative below:
Call to action
We are always looking to work with other public and private health research funding institutions to develop this approach further while helping patient groups collaborate with researchers. Our goal is to make this the new norm for conducting health research around the globe. If you would like to know more or are interested in partnering with us, please reach out.
Our Core Belief
Using a patient centered approach, we support research grants that enable patients to better understand their treatment options and to have a voice in trial design, thereby empowering them to be active agents in enhancing their quality of life.
Patient Arts for Health Global Exhibition
Art making includes a diverse range of human activities involving the creation of visual, auditory, or performing experiences, which communicate the creator's imagination, conceptual ideas, or technical skill, intended to express how we feel and with emotional power.
The Rising Tide Foundation is launching an international Patient Arts for Health Global Exhibition to collect and curate patient art offering new insights on what quality of life means to you through your art.