The European Patients’ Academy has a simple goal: to provide education and training to help patients become more involved in healthcare questions and in the development of new medicines.
EUPATI has already established itself as a key player in the involvement of patients in medicines development in Europe. But Europe is a large continent full of variety, and no two countries have identical approaches to involving patients in this process. The European Patients’ Academy has set itself the goal of developing a country-specific approach, with an initial target of setting up National networks in 12 countries.
On 22 April more than 180 people came to Dublin to share experiences and develop new thinking about how to spur progress at the national level – 102 of them from patient organisations.
- The European Patients’ Academy has a strong governance, and is working to refine its expert level patient training course in order to meet the many local challenges in best applying it.
- Patients and other stakeholders are keen – not so say impatient – to see the production of its second main product, the Research Toolbox.
- Individuals matter: finding the right people to lead, inspire and organise the National Networks is of paramount importance.
- The experience of Romania has shown that countries beyond the original twelve can be set up.
- The development of national teams by opening doors to government agencies and senior academics is useful.
- Case studies of successful national teams can share best practice and build confidence.
- The first months of training on the expert patient course suggest that the amount of work is significant. The pace of learning is fast. Feedback suggests that the face-to-face meetings are of enormous importance in supporting learning and in the exchange of ideas.
- Once trained, the expert patients can play a key role in spreading knowledge about involvement in medicines development throughout their own countries.
- Ways need to be found to prevent conflict-of-interest rules from excluding expert patients from working at both sponsor and agency (EMA) level.
- We need to learn how to work effectively with social media and online technologies – and there are plenty of excellent examples to inspire us.
- The willingness of professionals to accept the involvement of patients varies from country to country – but things are moving in the right direction.
- Much work remains to be done to ensure that the patient education model is sustained beyond 2017.
Progress so far
To set the scene, Eibhlin Mulroe from IPPOSI, the Irish Platform for Patients’ Organisations, Science and Industry, Ireland, brought delegates up to date with how EUPATI is evolving.
That evolution is itself a response to a set of clearly identified needs. Health research and policy are changing rapidly, but where is the patient voice? “We need more people who can engage on behalf of the patient,” said Mulroe, at all stages of research – including before the research is even designed. Against a background of public distrust and a lack of knowledge about medicines research, most cancer patients do not take part in clinical studies, and slow patient recruitment delays three-quarters of post-phase 1 studies.
Patients have – or should have – a key role in all aspects of health-related research, but across Europe there are not enough educated patients equipped to play that role. “We’d need 25,000 patient experts to cover all the ethics committees in Europe,” said Mulroe.
EUPATI’s strategy revolves around three levels. At the top is a training course for 100 patient experts, conducted in English.
The next level down is represented by the EUPATI Medicines Research Toolbox, a web-based learning-resource, available in English, French, German, Spanish, Polish, Italian and Russian, scheduled for release in 2016. (Delegates generally referred to it simply as “the toolbox”, and made it clear they want it to be released as soon as possible.)
At the widest level, there is the planned Internet Library, targeted initially at 100,000 individuals, and available in the same seven languages as the toolbox. Work on that is scheduled to go live in 2016.
The full range of medicines development is covered, all the way from planning and early testing through full-scale clinical trials and on to regulatory issues as well as the principles of health technology assessment. What it does not do, stressed Mulroe, is develop information specific to particular indications or conditions. It is about “what affects us all”.
Mulroe stressed EUPATI’s “strong governance”, evidenced above all by its patient leadership – unique in the IMI. That governance – and independence – is ensured by input from key advisory bodies and government agencies.
Three years into the project, there are clear signs of progress. “We have done our homework,” said Mulroe, referring to assessments of patient and public attitudes to medicines development. The EUPATI Network is growing too, with 1,200 members, for example, and even more subscribers to the Newsletter.
Mulroe then came to the development at the heart of the workshop: the National Networks. “We depend upon and need to reach people on the ground,” she said. The National Networks are there to make patient engagement work at a national level, ensuring that it understands educational needs, disseminates training information, raises public interest, and identifies people and resources to help with training.
So far, National Networks are moving in the United Kingdom, Ireland, Spain, Luxembourg and Italy, along with France, Italy and Malta. In Austria, Belgium, Germany and Poland, the situation was described as “challenging”.
Mulroe ended on an uplifting note, “This project is a gift to patient organisations in terms of the richness and objectiveness of the information,” she said. “We need to let everyone know that this is happening.”