Developing a European Reference Network from the perspective of a European Patient Advocacy Group representative

 Interview with Daniel Renault


Daniel Renault is actively engaged in French and European associations for patients affected by Renal Genetic Diseases. Within RD-Connect, he is involved in patient engagement and ethics. In this interview, he talks about developing the European Rare Kidney Disease Reference Network (ERKNet) from the perspective of a European Patient Advocacy Group (ePAG) representative.


24 ERNs have been approved and officially launched early March 2017 in Vilnius. One network is ERKNet (Rare Kidney) and you are representing the patients in this network. But before getting to your experience, can you tell us how the ERNs approach fits into the specific European Heath policy in particular with respect to the directive on cross-border healthcare?

With the same goal of improving health of European patients, Cross-border healthcare and ERN are different but neither in opposition nor in competition, on the contrary they will soon appear complementary. First the ERN approach focuses only on rare diseases while the directive concerns all diseases. Second the practice is different: it is no longer the patient who moves as in the directive but the expertise that transfers, diffuses to reach those who need it: the health professionals at the local level in the expertise centres and the patients.

The approach of the ERNs, has been widely discussed since 2012 in a multi-stakeholder committee (EUCERD) where patients were represented. I would like to take this opportunity to recall the decisive influence of the patients in the process through EURORDIS.

ERNs are aiming at “quality of healthcare pathways for all” within the EU. This is about solidarity, “for all” and efficiency, improvement of quality. We are thus dealing with a double process: on the one hand to extend and on the other hand to improve healthcare pathways; and the two feed on each other.

You say “quality healthcare pathways for all” is the central objective of ERNs. How this will translate into practice and concretely what patients can expect from this initiative?

It is clear that those who will benefit most from the ERNs are those who do not currently have access to a highly specialised quality and / or well-defined healthcare pathways. It is a matter of solidarity on a European scale.

But the project is useful for all patients in Europe. First, it will improve knowledge of what constitutes a quality healthcare pathway, by better integrating the voice of patients. It is known that the quality of life of patients with renal insufficiency is critical to the balance of their lives and their development when they are young. Beyond the potential development of innovative techniques to treat or delay the degradation of renal function, there are aspects such as access to treatment for renal insufficiency (dialysis, transplant) that are critical in the care and health. They are at the heart of ERKNet.

It will also bring about a strong integration between research, clinical, genetics, and the treatments of new generations. By better linking patients and expertise among themselves, the conditions for the emergence of an effective infrastructure are created, enabling research to build on critical masses of patients with standardized clinical information and biobanks of sufficient size.

Based on your experience in the Rare Renal ERN (ERKNet), what is the role of patient associations in an ERN?

The role of patient organizations was recognized from the outset as a determinant for ERNs. These ERNs are dealing with “healthcare pathways for patients,” it is logical that the latter have a say. ERKNet has made and will give patients plenty of room for its project and its implementation.

In the field of kidney rare diseases, we were fortunate to have already a single organisation (FEDERG federation) that covers the entire domain of ERKNet. For some other networks, integration is less easy due to a high number of associations that have no experience of working together. This advantage has enabled us, as early as 2015, to be proactive in bringing together all the European associations in the rare renal domain without waiting for the Commission’s directives.

FEDERG, on behalf of the patients, thus contributed to the development of the ERKNet project with the nephrologists. In the implementation of the project, our involvement will focus in particular on the characterization of the pathways, the transition protocols (child-adolescent-adult), the aspects followed of the impacts in countries with the patients, the ethical aspects, the development of patient capacities in safety and quality of care studies and development of research infrastructure (registries, biobanks). And of course our role will be to consistently ensure a strong and reactive link between the patients in the field and the management structure of the network.

We are therefore involved from the start on the ERKNet project, first as FEDERG and then more formally from the angle of the E-Pag. The E-Pag is the European Patient Advocacy Groups, which formalizes patient participation in the network process. Elections of patient representatives in ERKNet took place in spring 2016: Claudia Sproedt and I were elected representatives (respectively vice president and president of FEDERG).

As president of FEDERG, what is your appreciation of this new European network?

It is a great satisfaction because, beyond the strengths of the project I have just presented, ERKNet is the perfect example of the justification for the approach that we initiated 6 years ago when we create a European federation. There were as usual sceptical people but the promoters of the federation were bidding on the idea that healthcare policy for rare disease will increasingly be at European Level.

I have to say that FEDERG is active in many other fields (research projects, forum, establishment of good practice guides, participation in EURORDIS (Rare Diseases Europe) and RDI (Rare Diseases International). ERN is today and for years to come a central activity for us.

How did the project develop and what were the difficulties?

Two elements were critical for ERKNet, first the existence of a long tradition of research projects at European level, EURenOmics coordinated by Franz Schaefer, being one of the latest projects. last. Researchers, clinicians, geneticists and patients have the experience of working together. Then, at the patient level, the existence and legitimacy of FEDERG enabled us to be immediately operational to organize the involvement of patients in the drafting of the project.

It was necessary to go fast because the texts of the call for projects were issued at the end of 2015 and it was necessary to propose a project in June 2016.

Another critical element is that the implementation of the ERNs is not associated with any specific funding measure. The activities will have to be financed by the Member States. This absence must be seen as a guarantee of the sincerity of the institutes involved, the motivation for participation is not financial but aims to genuinely contribute to an integrated European project.

Let’s talk about the future: everything is in place OR is everything to be built?

Everything is to be built! The project is approved; the participating institutes have been validated. Everything remains to be done, 2017 should be a year of implementation: organization, contents, processes, many things to be specified by the partners. There is also provision for phasing in the implementation.

At FEDERG and ePAG level, we have organized the first E-PAG meeting of associations the 5th March 2017 in Amsterdam. 28 representatives gathered. And now we are ready to have patients participating to almost each thematic subgroup and task force of ERKNet. We are heading towards the official launching of ERKNet planned 23 and 24 May 2017 in Heidelberg.