At IHI, we recognise that patients (and their informal carers) can and should be involved in all aspects of our work. That’s why, in April this year, we launched a call for patients and informal caregivers to apply to be part of a new IHI patient pool. The eligibility criteria were simple – applicants were accepted into the pool as long as they were a patient (or an informal caregiver of a patient) with a chronic and/or lifelong illness/condition; a resident of an EU Member State or a country associated to Horizon Europe; and had a working knowledge of English.
In total, 133 people applied to be part of the pool, and 120 met these basic criteria and were accepted into the pool.
Facts and figures on the 120 members of the IHI patient 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.
The pool will remain in place until 2026. Members of the pool may be invited to participate in project meetings, scientific events, webinars, or trainings organised by IHI. Crucially, IHI will turn to the pool if patient / caregiver expertise is needed in core activities such as the evaluation of proposals, reviews of ongoing projects, and discussions on future funding opportunities.
“Patients bring unique experience, knowledge and skills to the table,” said Dr Hugh Laverty, IHI Executive Director ad interim. “I know that the new members of the IHI Patient Pool will increase the quality and impact of our activities and I look forward to working with them in in the years to come.”