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‘EUPATI has been a game-changer in the empowerment of patients’ – an interview with the project coordinators


Jan Geissler of the European Patients Forum

IMI Programme Office: Why was a project like yours needed in the first place in Europe?

Jan Geissler: As a patient community we dreamt of a project that would empower patients to be an active partner in medicines research and development (R&D). In some disease areas the patient community has been involved in R&D for a decade or two already, but it was not systematic.

With EUPATI we had the opportunity to implement a structured programme that trains patients and patient advocates on how drug development works and how all the regulatory processes around that work. This was really, really needed.

IMI Programme Office: Which project achievements are you most proud of?

Matthias Gottwald: The EUPATI expert training course which we developed is certainly a unique asset and achievement with almost 100 patient experts trained and more on the way. They are the ones who can really actively participate in all the decision points with the industry, regulators and HTAs [health technology assessment bodies]. Beyond that, I think the toolbox on medicines R&D, the material that is available on the website and now used by more than 500 000 people worldwide, is a huge achievement and allows everyone around the world to use the high quality-controlled material we produced.

Jan Geissler: We also established 18 national platforms which are based on the same model as EUPATI. The platforms are public-private partnerships led by patients, with academia and industry and in some countries also regulators. This has enabled patients on a national level to be involved in medicines R&D and regulatory affairs.

Another huge benefit of the project is the network that has emerged. Patient organisations are usually volunteer-driven, low-resource organisations and before EUPATI we didn’t have the capabilities to work across diseases areas. Thanks to EUPATI this finally happened and has been a game-changer in patient advocacy. We’re now sharing best practices across diseases, we work as a network, and benefit a lot from each other because everybody has a different set of experiences and the potential to influence the way drugs are being developed, regulated and made accessible to patients.

IMI Programme Office: What was the overall impact of EUPATI on the medicines R&D process?

Jan Geissler: I think EUPATI has been a game-changer in the empowerment of patients because we can see people trained by EUPATI almost everywhere, be it in regulatory committees, industry-led research projects and clinical trials, academic projects or ethics committees. We can clearly see the difference that this empowerment makes. For example, before training patients are usually not involved in these kinds of committees and research projects, and after the training they suddenly get engaged. The final goal is to improve the outcomes for patients and that’s why involving patients in R&D, clinical trials design and regulatory decisions is absolutely crucial. We’ve achieved that and we can see a change already.

IMI Programme Office:  Are patients already benefitting as a result? Not just patients involved in this project, but patients in general?

Jan Geissler: Yes, we can see the difference that this makes for patients. For example, we see clinical trials changing shape, and trial outcomes being defined differently. We can also see that patients are being involved in regulatory discussions and might be the tipping point of a yes/no decision by putting patients’ needs at the centre. All that, of course, benefits patients.

When it comes to medicines development, we need much faster innovation in Europe. To get there, we need patients to say what they really need, instead of doctors, regulators, and industry people thinking about what patients may need. Nobody can tell this as well as patients themselves. This has been done for HIV, we’re now learning how to do it for cancer, and we see it being implemented across a range of other diseases. EUPATI started this movement.

IMI Programme Office: How did the industry benefit from this project?

Matthias Gottwald: The industry benefits from EUPATI by having the opportunity to work with a more empowered patient community, sharing our

Matthias Gottwald of Bayer

expertise in research and development with them, and on the other side to have the contributions of patients who are familiar with all the aspects of R&D and thereby could help us in all the steps with their perspective.

IMI Programme Office: Are the EUPATI learnings already being used in the industry?

Matthias Gottwald: Yes, more and more companies are actively using what they learned from the collaboration in EUPATI in their R&D. It is not completely spread across all the industry, but this is under way. The learnings from this project will also be taken up in future IMI projects.

IMI Programme Office:  How did the academic community benefit from EUPATI?

Jan Geissler: The academic community benefited from the project by getting a neutral platform to collaborate with industry, regulators and patient organisations. Also, a lot of EUPATI publications, co-authored by academics, were published in high-impact journals, which contributed to increasing their reputation.

IMI Programme Office: Would all this have been possible without IMI and this public-private collaboration?

Jan Geissler: It would have been very difficult to implement this without IMI, because IMI is a trusted platform for pre-competitive collaboration of all the different stakeholders. The relationship between patients and industry is always under a lot of scrutiny – there is a lot of fear that the industry might influence academics, regulators and patients. Thanks to all the transparency rules and financial regulations in place, IMI has a very robust framework for this kind of collaboration to happen. What IMI has established is very unique on a global level. Without IMI, it would have been difficult to establish a similar project and fund it in a transparent and collaborative way without compromising the independence of any of the partners. From that perspective, IMI has been a key platform for this.

IMI Programme Office:  Your project developed a lot of useful resources and tools. Is there a sustainability plan in place?

Jan Geissler: We have a sustainability plan in place but it’s only a bridging model. Like for any EU project, as soon as the funding ends, it is challenging. We have a model at the moment for the next three years, and during this period we are going to continue to run the Patient Expert Training Course, provide the EUPATI Toolbox on medicines R&D in nine languages, update the content, etc. We are also supporting the national platforms so that they talk to each other and share best practices.

But I wouldn’t say that our sustainability has been secured. We really call on the EU to help us with that because industry is ready to support us but they can only do it to a limited extent. There is a core interest of the European community to have educated patients and empower them much more broadly to be engaged in R&D and make sure that innovation delivers what patients want. We need more resources to have more impact. Trained patient experts are the base-level resource for patient engagement in R&D across the spectrum.

IMI Programme Office:  When it comes to patient involvement, what advice would you give to coordinators of future IMI projects?

Jan Geissler: I would tell them to involve experienced patient experts at the core of their project. There is a very professional but under-resourced patient community out there that is willing to help and really wants IMI projects to do the right things. So think about patient involvement –and not at the very last minute before submitting a proposal. Think about it from the design stage, from the beginning: ‘how do I make sure that my project is patient-centric?’ I think that should be a core issue for any IMI project coordinator.

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