On the occasion of a meeting of a delegation of ERN hospital managers in Paris on 16 and 17 May, organised on her initiative, Eve spoke on the ERNs, the role of the hospital managers in supporting them and the outcome of the two-day gathering.

Eve Parier is CEO of the hospital group St Louis, Lariboisière and Fernand Widal, which since July 2014 belong to the Greater Paris University Hospitals (Assistance Publique- Hôpitaux de Paris, AP-HP). She began her career at the Greater Paris University Hospitals where she held different posts, including Deputy Director in hospitals and Project Director in the office of the CEO of AP-HP. Eve worked for two years as Director of Human Resources at the hospital of Versailles before joining the office of the Minister of Health as adviser in charge of relations with hospital professionals, a post which she also held for two years.

You were responsible for this event, which brought together several ERN hospital managers here in the Saint Louis hospital on 16 and 17 May. What was your reason for organising this event?

It all began at the 2017 ERN conference in Rotterdam, to which the ERN hospital managers were invited for the first time. There we held meetings between hospital managers and coordinators, and understood that we could organise the directors in the same way as the coordinators were structured. The invitation was renewed in Brussels in 2018 and then we received the support of the European Commission to organise this event. The main question we wanted to ask ourselves is how we can strengthen our efforts and provide even more support to the ERNs.

Are you satisfied that this meeting helped to answer this question?

It was two days of really interesting exchanges — what I particularly liked were the interactions of those with a genuine desire to communicate the difficulties being experienced, and those offering solutions. When we all come together to reflect on a problem, it becomes far easier to envisage  solutions.

Why is the support of hospital managers so important for the success of the ERNs?

An ERN can operate without a director, but it will work at a much slower pace compared to those that receive the help and support of the hospital management. These are large-scale, highly ambitious projects, which need all the support they can get if they are to improve patient care: they require everyone to be involved, including the managers.

Do you have examples of such support?

It can start with basic support, such as the allocation of meeting rooms, and can extend to the allocation of human resources, even on a full time basis. Some hospital managers also provide resources in specialised areas such as project management. And this goes in both directions: the ERNs can also return the support to the hospital managers, by making strategic projects in their hospitals more visible and helping to improve overall outcomes.

What is the added value of the ERNs in their current state? What further potential could be explored with them?

After the launch of the ERN embryos, we are now in the consolidation phase. There is still a lot of work to do, but the road map depends on each individual ERN: for example where they currently are in their development process, and their history. In each case, the main aim is to ensure that increasing access to care for patients and improving expertise are placed at the centre of our efforts.

Is there any scope for action that could require more attention, which may be currently underestimated?

Each ERN has about 4 or 5 key priority themes underpinning current efforts, including cross border care, training/learning and data management. However, the financial problem is important and I think we are coming to a point where we will have to decide whether to open the door to private funding or not. It is a real issue that is at once political, ethical and strategic.

What could be done further or better to support ERNs?

It is by making the various players work together that we can truly support the ERNs, by sharing practices between managers and between coordinators, and with each other, but also by including patients, the scientific community (around the coordinators) and national level representatives.

Can you say a few words about the French situation?

From the French point of view, there is a real feeling that the ERNs represent, at European level, what has already been done in France in the context of the “sectors” (“filières”) of rare diseases and the labelling of centres of expertise, through three successive Rare Diseases Plans since 2004. For us, it was quite simple to enter into the ERN system because we had this background and had a clear and transparent overview in France of where are expertise lay. On the other hand, in addition to EU funding, France itself has added its own funding, which has had an important leverage effect.

Can the ERNs inspire other parts of the healthcare system?

I believe that the ERNs can be a model, as they propose the different models for the organisation and structuring of tomorrow's medicine: be it models in the areas of digital, communication, training or the patient’s multidisciplinary approach, such as “multidisciplinary consultation meetings” (réunion de concertation multidisciplinaire), as we call them in France. In the case of France, we have already been structured like this in the area of rare diseases for the past fifteen years. It is clear that this model is likely to expand.

Have decisions been taken at this meeting, which ends today, and what are the future prospects?

It was decided to structure the group in the same way that the group of coordinators is structured. The two days led to the development of an action plan and a list of objectives ranging from a better dissemination of information to the hospitals managers, to studies to be carried out, and we are all going back to our hospitals with messages to convey internally in order to further structure the activities.