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IMI impact on patient involvement


What's the problem?


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For many years, patient involvement in research was restricted to participating in clinical studies and trials as research subjects. Today, it is widely recognised that patients can and should be much more involved in all aspects of research, including agenda setting, study design, communication, and ethics. At the same time, many researchers are now well aware that patients bring unique knowledge and skills to projects which can help to improve the quality of research. However, there are still too many projects and initiatives where patients are either not involved at all, or where their involvement comes too late to allow them to really influence the project's direction and outcomes.


What is IMI doing about it?


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At IMI, we consider patients equal partners that can and should play an active role in the medicines R&D process. Including patients’ perspectives in IMI activities and facilitating patient participation in projects is therefore a top priority for us. As of the end of 2020, 60 % of IMI2 projects involved patient organisations as consortium partners, members of advisory boards, ethics boards or members of stakeholder groups. Through our pool of patient experts and our wider network of contacts, we also involve patients in our wider activities, including as experts for reviewing project proposals and as speakers in our events. In addition, a patient representative is a full member of our scientific committee.

More broadly, IMI projects are developing resources and showcasing best practice when it comes to the question of how and when to best involve patients in research.


IMI is advancing patient involvement in research by…


…creating a pool of patient experts Although we have involved patients in IMI activities since our creation, in 2019 we created a pool of patient experts to further strengthen the role and voice of patients in IMI activities at both strategic and operational levels. There are over 150 patients and family members/informal carers in the pool, and they contribute to IMI's work in diverse ways.
…encouraging patient organisations to contribute to IMI as Associated Partners A number of patient organisations contribute to the IMI2 programme as Associated Partners. Associated Partners are typically involved in the development of new Call topics from the outset. As is the case with EFPIA partners, Associated Partners do not receive IMI funding, but contribute their own resources to the projects, mainly through in-kind contributions. IMI matches resources invested in projects by Associated Partners, making this a good way to leverage precious assets.
…promoting patient education For meaningful patient involvement in research, it helps if patients understand the medicines development process and the jargon associated with it. IMI’s EUPATI and EFOEUPATI projects created a wealth of educational resources designed specifically for patients who want to get involved in research. The course has trained over 200 patient experts and more than 4 million people have accessed the multi-lingual toolbox. The projects' legacy lives on through the EUPATI Foundation.

…providing practical resources on patient involvement

Although growing numbers of researchers understand the importance of patient involvement, many do not know how to do it in practice. IMI project PARADIGM delivered a comprehensive toolbox that brings together in one place all the project’s recommendations, tools and relevant background information to make patient engagement in medicines development easier for all.

…advising on including patients’ views on benefits and risks

Balancing the benefits and risks of medicines is a major challenge in drug development, and patients’ input is key. IMI’s PREFER project is developing methodologies and recommendations on when and how to best to include patient perspectives during the development, approval, and post-approval of new therapies. The framework developed by the project is currently under evaluation by the European Medicines Agency and health technology assessment bodies.

…sharing best practice on patient involvement in research projects

Many IMI projects have involved patients in their activities in diverse ways, and have shared their experiences and lessons learnt with the wider scientific and patient communities. For example,
 - U-BIOPRED produced ‘A short guide to successful patient involvement in EU-funded research’.
 - APPROACH published an article in Research Involvement and Engagement on ‘Making the patient voice heard in a research consortium: experiences from an EU project (IMI-APPROACH)’.
 - EPAD published an article in the same journal on ‘Involving research participants in a pan-European research initiative: the EPAD participant panel experience’.




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