The IHI Patient Pool - because we want patients and caregivers to contribute to IHI’s activities
Today, it’s widely recognised that patients (and informal caregivers) can and should be involved in all aspects of research. This includes the activities of organisations like IHI that fund health research. That’s why we set up the IHI Patient Pool – to create a pool of patients and informal caregivers who can support IHI activities by bringing their unique perspective, experience, and expertise to the table.
The pool was created in 2023 and will run until 2026. Currently, there are 120 people in the pool:
- 87 patients and 33 caregivers
- 70% female
- From 25 countries
- 25% were also in the IMI Patient Pool
- Direct experience as patients / caregivers in rare diseases, cancer, neurodegenerative diseases, inflammatory/immune diseases, diabetes, musculoskeletal disorders, and more.
- A majority have knowledge or experience in patient reported experience, preference, and outcomes, in patient engagement and involvement, in using telemedicine applications as well as digital, remote and wearable technologies in medical healthcare, in research and innovation activities, in health industries, and ethics and regulatory processes.
Members of the IHI Patient Pool receive regular updates on scientific results from our projects and have the opportunity to get involved in IHI activities in a variety of ways. For example, they may be invited, as attendees or speakers, to participate in project meetings, scientific events, webinars, or trainings. In addition, the IHI Programme Office may invite IHI Patient Pool members with relevant knowledge and experience to evaluate project proposals or ongoing projects, or to provide input in discussions on future IHI calls for proposals.
More information on the kinds of tasks Patient Pool members may be asked to carry out, as well as details of potential reimbursement, can be found in the call for expressions of interest. Note that we cannot guarantee that all Patient Pool members will be allocated a task during the lifetime of the pool.
How we created the IHI Patient Pool
We opened applications for the IHI Patient Pool on 27 April 2023 and the deadline was 8 June. More details of the application process and selection criteria can be found in the call for expressions of interest. We also ran a webinar for potential applicants.