What's the problem?

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 are we doing about it?

At the Innovative Health Initiative (IHI), we consider patients equal partners that can and should play an active role in the medicines R&D process. Including patients’ perspectives in IHI and Innovative Medicines Initiative (IMI) activities and facilitating patient participation in projects is a top priority for us. More than 63% of IMI2 projects involved patient organisations as consortium partners, members of advisory boards, ethics boards or members of stakeholder groups. IHI and IMI have endeavoured to include patient perspectives at every level, integrating a patient representative on the IMI Scientific Committee and encouraging patient organisations to become Associated Partners or project partners. 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.

More broadly, IHI and 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.

IHI / IMI is...

…creating a pool of patient experts

Building on the success of the IMI patient pool launched in 2019, IHI has launched a new patient pool which is 120 participants strong. Although patients have been involved in IMI activities since our creation, the pool of patient experts was established to further strengthen the role and voice of patients in IHI and IMI activities at both strategic and operational levels. IHI’s patient pool is 70% female, from 25 countries and consists of a combination of patients and caregivers.

...encouraging patient organisations to participate in the development of IMI call topics

Patient organisations with their own research funding programme could become Associated Partners of IMI and contributed to the definition and scope of call topics. Leading patient organisations, trusts and charities like Autism Speaks, Autistica, JDRF, the International Diabetes Federation, Children’s Tumor Foundation, Parkinson’s UK, TB Alliance, and Obesity Action Coalition were Associated Partners and contributed to IMI projects on various disease areas like diabetes, autism, neurodegenerative diseases and cancer.

‌…encouraging patient organisations to become project partners

‌More than 30 patient organisations, including the European Patients’ Forum, Alzheimer Europe and Eurordis are full project partners within IMI projects. Their contribution to the consortium includes valuable input on many aspects of the project, by helping define the outcomes that will genuinely benefit patients, determining the appropriate benefit-risk balance in new treatments and providing input into the best ways to involve patients in project governance. Examples of projects that have successful integrated patient organisation partners include HIPPOCRATES.

‌…promoting patient participation in advisory roles

‌Within IMI, a patient representative sat as a full member on the IMI Scientific Committee, and IMI/IHI advise that patients are invited to sit on advisory and ethics advisory boards to give their unique perspectives and have impact on medical research.

‌…promoting patient engagement in medical research

‌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 know more about medical 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. The PARADIGM and PREFER projects developed frameworks, recommendations and sets of tools to help advise medicine developers on how best to integrate patient perspectives and experiences into the drug development process. The PREFER project framework has been approved by the European Medicines Agency.

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…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.

…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’.