IMI pool of patient experts

IMI has involved patients in its projects and activities since the very beginning. Now, IMI is creating 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 will be 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.

Creating the pool - in practice

Patients (and family members and carers) who wished to be part of the pool were invited to submit an expression of interest (EoI) by the deadline of 16 July 2019. The basic criteria for inclusion in the pool are:

  • being a patient (or a family member or carer of a patient) with a chronic / lifelong illness or condition;
  • being a resident of an EU Member State, a country that is associated with the EU’s research programme Horizon 2020, or the WHO European Region
  • having a specific interest in one of the disease areas featured in IMI’s Strategic Research Agenda;
  • a working knowledge of English.

All applicants who meet these basic requirements will be added to the pool. More information on the criteria and the process for creating the pool can be found in this document

What happens next?

IMI received 176 EoIs from people who want to be part of the pool. The IMI Programme Office is now assessing the eligibility of the EoIs and will inform all applicants of the outcome once the process is complete.

When a task comes up at IMI that would benefit from patient/carer input, IMI will see which patients/carers in the pool are the best fit for that task. This is why applicants were also 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. All patients / carers in the pool will carry out their tasks in their personal capacity.

Benefits of contributing to IMI activities as a patient / carer expert include the opportunity to:

  • influence IMI’s activities on both strategic and operational levels;
  • work alongside experts from other sectors (academia, industry, regulatory, etc.);
  • raise the profile of patients as equal partners in research in the IMI community and beyond;
  • learn first-hand about the latest research developments in your disease area.

Tasks will be allocated on an ad hoc basis to the patient(s) / carer(s) with the most relevant profile. This means that at this stage, 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.

Find out more

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.