The EU Innovative Medicines Initiative (IMI) is encouraging patients and patient groups to play their part in developing therapies of the future. With a budget of €3.3 billion (2014-2020), the IMI is the world’s largest public-private partnership in the life sciences.

The initiative funds projects designed to unlock bottlenecks in medicines development, encouraging collaboration between academics, industry – and patients. In a strong push for greater patient engagement, it has highlighted a range of ways in which patient voices can shape medicines research.

‘For many years, patient involvement in research was restricted to participating in clinical studies and trials as research subjects,’ according to the IMI. ‘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.’

It says researchers are now well aware that ‘patients bring unique knowledge and skills to projects which can help to improve the quality of research’.

Patients can benefit from joining the boards of IMI projects in several ways:

  • Influence research. Patients can respond to consultations on planned IMI activities, helping to shape the direction of research in their disease area. By joining the boards of individual projects, patient advocates can influence study design and make clinical studies more patient-friendly.  
  • Receive funding. Most patient organisations in the EU and countries associated with European research programmes are eligible to receive funding from IMI.  
  • Form networks with leading researchers. Patients in IMI projects work alongside top researchers from academia and industry, offering unique access to top experts.
  • Access to the latest science. IMI projects are at the cutting edge of their fields. Participants have unparalleled access to the latest information which they can share with the wider patient community.

There is a range of ways to engage with IMI projects including: as full project partners, as members of project advisory committees, as associated partners, and by proposing ideas for research topics. (Find out more through this guide on IMI participation)

Several IMI initiatives involve patients in their work, while some are directly focused on enhancing the process of patient engagement by co-developed new tools and methodologies.

PFDM participates in PARADIGM, which is co-led by the European Patients’ Forum and the European Federation of Pharmaceutical Industries and Associations (EFPIA). PARADIGM’s mission is to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) and demonstrates the ‘return on the engagement’ for all players.

Other IMI projects with strong patient involvement include:

  • PREFER: investigating how and when it is best to perform and include patient preference in decision-making during the drug life cycle.
  • U-BIOPRED: paved the way for more personalised treatments for severe asthma. Through a dedicated patient input platform, patients provided advice on ethical, scientific, and communication issues.
  • PROactive: developed methods to incorporate the impact of chronic obstructive pulmonary disease (COPD) on patients’ daily lives into drug development.
  • Patient organisation Alzheimer Europe is an active partner in our dementia projects including Pharma-Cog, AETIONOMY, EMIF and EPAD.
  • EU-AIMS: paving the way for new treatments for autism spectrum disorder. US-based patient advocacy group Autism Speaks is a partner in the project and is contributing €1 million to its work.
  • Diabetes charity and patient organisation JDRF has contributed to IMI’s IMIDIA and SUMMIT projects and is now an Associated Partner in IMI as it is contributing resources and expertise to the INNODIA project on type 1 diabetes.

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