To focus our efforts and increase our impact, we have designed two umbrella focus areas under the themes Improved Patient Outcomes and Science of Prevention and Detection.
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 guidance to the application requirements are divided in:
This checklist contains some important Patient Engagement points to be considered in the application phase, during the implementation of the project, and beyond.
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.
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
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?
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.
In 2020, Rising Tide Foundation partnered with Patvocates to identify gaps in Patient Engagement in research and how research funding organizations could address them. The goal is to understand how funders can support the achievement of the above-mentioned research approach.
This collaboration has resulted in the development of guidance documents for public and private health research funding institutions recommending standard approaches for implementing patient involvement from the earliest stages of health-related research. It also contains guidance for funding institutions on how to involve the patient community and support the inclusion of patient perspectives on clinical and other research programs that they fund.
We are currently conducting the last stages of formatting and expect to make these documents available to the public in this section of our website in the coming months.
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.