'As a partner in the U-BIOPRED project on severe asthma, my voice as a patient was listened to from the outset and patient input proved instrumental in helping the project achieve its goals.'
Breda Flood, European Federation of Allergy and Airways Diseases Patients' Associations
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, researchers are now well aware that patients bring unique knowledge and skills to projects which can help to improve the quality of research. At IMI, we seek to encourage patient involvement in all our activities, and many projects already have patients on board. We also involve patients as speakers and panellists in our events and encourage their participation in consultations.
The benefits of collaboration
From the patient side, benefits of participating in IMI include:
- Influence research. By participating in IMI, you will have the opportunity to influence research into your disease or condition. We often hold consultations on planned activities, and these give patients and others the opportunity to influence our future direction in the area under discussion. Within projects, patients can influence study design, to make clinical studies more patient friendly, or provide patients’ unique perspective on benefits and risks, for example.
- Receive funding. Most patient organisations in the EU and countries associated to the EU research programmes are eligible to receive funding from IMI. This will support your participation in an IMI project.
- Form networks with leading researchers. Patients in our projects work alongside top researchers from academia and industry. Getting to know these people makes it easier for patients to benefit from their expertise in the longer term.
- Access to the latest science. Our projects are at the cutting edge of their fields. By joining one of our projects, you will have access to and even be involved in the latest developments in your field, and be able to pass this information on to the wider patient community.
How to get involved
There are a number of ways for patients to get involved in our projects and activities. These include:
- As full project partners. To become a full project partner in a project, you will need to form or join a consortium in response to an IMI Call for proposals. We launch a number of Calls throughout the year, and publish draft topic texts on the Future Topics page of the website. To stay up to date on our latest Calls news, sign up to our newsletter, follow us on Twitter, or join our LinkedIn group.
- As members of project advisory committees. Many projects include patients on advisory and ethics boards, for example. Members of these advisory boards do not receive funding directly from IMI. However, the project may cover some costs. For opportunities in this area, you should contact directly the project you are interested in.
- By becoming Associated Partners. Patient organisations with their own research funding programmes can become Associated Partners of IMI. 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 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.
- By proposing ideas for topics. You can suggest ideas for our projects by filling in a simple form. If you choose this option, you should be aware that if your idea is adopted and ultimately used in one of our Call for proposals, you will have to apply for funding like any other organisation. Your proposal would therefore be evaluated by independent experts alongside all other proposals received for the topic in question.
More information on these different options can be found in this guide
Resources for patients from IMI
- The Innovative Medicines Initiative and patients - a partnership - Based on interviews with patients and other participants, this brochure showcases how patients can get involved in our projects and wider activities.
- A short guide to successful patient involvement in EU-funded research - Lessons learnt from the U-BIOPRED project
Resources for patients from our projects
- Patient engagement guide - Advice to potential applicants from patient groups and other sectors (e.g. academia) for meaningful patient engagement in our projects.
- EUPATI resources – EUPATI (the European Patients Academy) is an IMI project that has developed a wealth of educational materials designed specifically for patients on medicines research and development. The website includes extensive training and guidance material, as well as links to the project’s national platforms for patient advocates and information on courses for patient advocates.
Examples of IMI projects with strong patient involvement
- PREFER is 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 is 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.
Getting to grips with intellectual property
Intellectual property (IP) represents a challenging area for collaboration involving so many diverse stakeholders. IMI’s IP policy has proven effective at protecting project partners’ interest while encouraging the sharing and exploitation of knowledge. The IP policy’s strength lies in its flexibility; this allows it to be readily adapted to the needs of each project. Thanks to the IP policy, project partners are sharing compounds, data and knowledge with one another in an unprecedented way.
- For questions about our Calls for proposals, application procedures, and funding rules contact the IMI Infodesk
- Read our tips for finding project partners