Cancer research
– 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 Prevention and Detection.

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 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

  • Communication and dissemination of study outcomes with patients and public partners are planned
  • Collaboration with patient community on trial outcomes is planned 

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.

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.

Please find more information about the Patient Engagement initiative below:

Recommendations on Patient Involvement for Funding Institutions

Patient Involvement for Applicants

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.

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