Dr Christiansson qualified as a medical specialist in 1987 and has since worked as a clinical consultant in both the Swedish healthcare system and abroad. Among assignments for scientific and professional societies, he was for many years involved in European specialist examinations and training programme accreditation. During 2012-2016, he was elected to the Board of the European Union of Medical Specialists – UEMS, and as President of a Specialist Section.

Dr Christiansson is currently working for the National Board of Health and Welfare, which is a Swedish government agency. In 2015, he was appointed Senior Adviser for Medical Affairs and Vice Chair of the licensing National Board for Highly Specialised Care of the same agency. He is member of an expert group under the Committee of Senior Officials to the Nordic Council of Ministers for Health and Social Affairs. He has been the national representative on the ERN Board of Member States since it was established, and early this year he was elected to serve as co-chair of the board for two years.

Could you explain what the role of the ERN Board of Member States is?

The ERN Board of Member States (BoMS) was set up in February 2014 to represent EU countries and the EEA in driving the ERN initiative. It decides on ERN memberships, offers strategic support and issues policy documents. This year’s amendment to the 2014 ERN Commission Implementing Decision aims to clarify the steering role of the BoMS, but also on how it can provide guidance to the networks and advice to the Commission by active exchange of information between Member States.

What are the big achievements of the ERNs you would like to point out after their first two years of activity?

Since the launch, the ERNs have worked hard to establish their own governance models and to communicate within networks, as well as externally, via websites and other means. Considering the scale of the whole concept and the size of the individual networks, this has of course been a massive achievement. Clinical guidelines and virtual consultations are examples of tangible outputs at this early point in the development of the ERNs. The network members and boards, together with the group of coordinators, and supported by the Commission, have delivered impressive work so far.

During the start-up phase, it has become evident that networking is equally important outside the respective networks, therefore much effort has been put into, and constructive results have come out of the different working groups and other collaborations. The networking was extended to include not only clinicians and researchers, but also patient organisations, hospital managers, national authorities and possibly other stakeholders who share the same vision – to make evidence based knowledge and expert advice available to patients with complex or rare diseases and to medical personnel all over Europe. I’m confident that we will see more of this!

Amongst other achievements, patient registries and research are areas that must be mentioned. ERN-wide registries are a high priority and there are five operational ERN-wide registries currently funded and preparations for up to 19 additional registries are ongoing. Research and knowledge generation are areas where synergies are continuously sought with other closely related activities of outside actors in the Rare Disease community and with other research infrastructures and EU-funded projects.

Looking back to the years prior to the launch, my personal reflection would be on the “added value” of the ERN concept. This was the most prevalent question asked, and thoughts circled around the ongoing work to set up a system for remote consultations versus patient referral as means of improving care.

With ERNs already in place, focus is gradually shifting to generation and transfer of knowledge. For this, we need research on aggregated data and high-quality registries, based on validated sets of information. There is so much going in Europe and internationally, and I’m convinced that the ERNs, in collaboration with many others, will play an important role in taking knowledge on rare and complex disease to a new level!

Can you tell us more about the “Statement on Integration of the ERN to the healthcare systems of Member States” that the Board of Member States recently approved? What kind of support do the Member States provide to the ERNs and how are they linked to national patient’s pathways?

ordinators Group, the joint working groups and with others involved. The ERN Board of Member States’ Statement on ERN integration, with its annex containing a proposed list of prioritised potential actions, aims to encourage Member States to support the ERN concept as such and the work of its networks, members and affiliated partners.

To facilitate the integration of ERNs to their healthcare systems, the Member States are recommended to assess, and if needed, adapt or update the legal framework and relevant national policies, plans or strategies. Equally important, is that patients’ pathways are well-defined, and that clear systems for referral to the ERNs are developed. Care pathways need to be linked to the referral system, and therefore aligned to ensure ERN accessibility according to the needs of MS. National networking is key in this process, and active support within countries can trigger networking between ERN members and their national expert counterparts/HCPs. Involvement of expertise and hospital managers is advocated both into policymaking and in defining the role of the ERNs in relation to National Highly Specialised Care and Centres of Expertise.

The statement also elaborates on how Member States can develop strategies for disseminating information about ERNs to healthcare providers, for increasing access to the knowledge generated by the ERNs, and also for making patient pathways and referral systems known. Lastly, the Member States are encouraged to reflect on the means to best support the work of ERN Coordinators, Members and Affiliated Partners and to look into if or how national authorities can have a coordinating role in this.

• More information on the ERN Board of Member States.
• More information on the Statement on Integration of the ERN to the healthcare systems of Member States.