IMI pool of patient experts

IMI has involved patients in its projects and activities since the very beginning. In 2019, IMI created a pool of patient experts to strengthen the role and voice of patients in IMI activities at both strategic and operational levels. Patients who are part of the pool are invited on an ad hoc basis to:

  • provide input on IMI’s scientific strategy (annual priorities, topic development etc.), for example by taking part in early consultations / workshops, SGG meetings, etc.;
  • participate in panels to review project proposals;
  • participate in reviews of ongoing and closed projects;
  • review the content of documents prepared for patients and the general public;
  • participate in IMI events.

All patients / carers in the pool carry out their tasks in their personal capacity.

Who is in the pool?

Patients (and family members and carers) who wished to be part of the pool were invited to submit an expression of interest (EoI) to IMI. The most important criteria for inclusion in the pool were:

  • being a patient (or a family member or carer of a patient) with a chronic / lifelong illness or condition;
  • having a specific interest in one of the disease areas featured in IMI’s Strategic Research Agenda.

In total, 157 applicants (118 patients and 39 family members / informal carers) met the basic requirements and were added to the pool.  They come from 26 countries and 57 % are female. The pool members have direct experience as patients or family members / carers of diseases in fields such as cancer, infectious diseases, inflammatory / immune diseases, metaboloic diseases, neurodegenerative diseases, neuropsychiatric disorders and pain, and rare / orphan diseases.

A large majority (89 %) have knowledge or experience of research an innovation activities. Around half (52 %) have knowledge or experience of IMI and public-private partnerships.

How does IMI select patient experts for different tasks?

When a task comes up at IMI that would benefit from patient/carer input, IMI sees which patients/carers in the pool are the best fit for that task on the basis of the information submitted in the EoIs. This is why applicants were asked to detail their knowledge and experience of research and innovation activities; drug development; ethics; the pharmaceutical sector; IMI / public-private partnerships; working with different stakeholders in medicines development. 

Because tasks are allocated on an ad hoc basis, no indication can be provided about when and how often individual patients experts will be invited to perform activities/tasks for IMI. Furthermore, IMI cannot guarantee that all pool partipants will be allocated a task at some point.

Webinar for patient pool members

  • IMI will hold a webinar for pool members on 5 November 2019 to explain the tasks in more detail and answer any questions patients / family members and carers may have. If you are a pool member and have not received an invitation to the webinar, please contact patients[AT]imi.europa.eu.

Find out more about the creation of the pool

More information on the criteria for inclusion in the pool, the application process, and the kinds of tasks participants could expect to be involved in, can be found in this document.

In addition, IMI held a webinar for people interested in joining the pool on Tuesday 18 June.

Questions?

If you have any questions about the pool of patient experts, or IMI’s patient engagement work in general, don’t hesitate to contact us via patients[AT]imi.europa.eu

Data protection

Details of IMI's data protection policy can be found here.