The value of including patients in medical research is now widely accepted. Yet one of the challenges for scientists and companies keen to embrace the concept of patient engagement is identifying suitably-qualified patient experts to work with.
Now the EU’s Innovative Medicines Initiative (IMI) – the world’s largest public-private partnership in healthcare – has found a novel way to make it easy for researchers to involve patients.
It has announced plans to create a ‘pool’ of patient experts to strengthen the role and voice of patients in IMI activities. This will allow researchers working on projects backed by the IMI’s €3 billion funding pot to quickly find patients and patient advocates at various stages of their work. Researchers will be free to invite patients to provide input on scientific strategies; review project proposals; and assess the results of ongoing and closed projects.
Wanted: patient experts
The pool of patient experts is open to a wide range of patients (and family members and carers) with a chronic illness linked to IMI’s Strategic Research Agenda. The conditions for being part of the pool are simple and people who are interested in getting involved can submit an expression of interest via the IMI website.
When registering their interest, patients will be asked about their knowledge and experience of medical research and drug development, among other things. Whenever IMI has a task or activity that would benefit from patient input, the IMI Programme Office will turn to the pool to find the patient(s) with the most relevant knowledge and experience. For all tasks, patients will act in their personal capacity.
‘Patient engagement has always been a priority for IMI, and I am convinced that patients can and should be actively involved as equal partners in medical research and innovation,’ said IMI Executive Director Dr Pierre Meulien. ‘I hope that this pool of patient experts will provide both patients with a channel to influence research into their disease or condition, and IMI with information that will allow us to deliver projects that are truly aligned with patients’ needs.’
For patients, the benefits of getting involved in this new initiative include the opportunity to influence IMI’s activities; work alongside experts from other sectors (academia, industry, regulatory, etc.); raise the profile of patients as equal partners in research; and learn first-hand about the latest research developments in their disease area.