Patients could well lose out now the Brexit vote has endangered the networks that link up specialised providers to pool expertise, writes Elisabetta Zanon

On 21 June, just two days before the EU referendum, several senior NHS clinicians were very busy finalising their applications to establish European reference networks for rare and complex diseases.

They certainly submitted their proposals with apprehension knowing that, in the case of a ‘Leave’ vote, all their efforts could potentially go to waste.

Only healthcare providers of EU or EEA countries can be members of these networks.   So what is going to happen now with the NHS’s participation in European reference networks and what about our involvement in EU clinical collaborative initiatives more generally?

Strategically important

It is clear that exclusion would mean the NHS and patients become much worse off.   When the European Commission started shaping plans for the development of European reference networks, from the very outset, many specialised NHS providers wanted to take a leading role.

This new form of EU collaboration between hospitals was indeed seen as strategically very important to progress medical science and improve patient treatment in clinical areas where expertise is rare, and where collaboration at EU level brings significant added value. 

The plan with these networks is to link up leading specialised providers from across Europe so they can pool knowledge and expertise. This is intended to lead to more evidence-based treatments and increase the speed and scale at which innovation in medical science and health technologies is incorporated into healthcare provision.

Participating clinicians will collaborate on a wide range of activities, from improving clinical guidelines and patient pathways to sharing medical information on clinical cases and agreeing on treatment options, to conducting clinical research and improving medical education and training.  

In the aftermath of the EU referendum, an unhelpful climate of anxiety has emerged both for the NHS consultants leading these networks and for their fellow partner European clinicians

While collaboration has long been a common feature in the international medical world, what is new with European reference networks is that this collaboration will be put on a more formal footing and structured around a defined programme of work.

Importantly, participants will benefit from EU support, including a joint IT platform, which will support the secure and confidential exchange of patient information across borders.

Another important innovation is that these networks will function as an accreditation system, with participating healthcare providers being awarded a protected logo which certifies them as centres of clinical excellence in a particular clinical domain.  

With the NHS being an international leader in research and treatment for rare and complex diseases, unsurprisingly there has been significant NHS interest in this initiative, with a quarter of all networks being established led by NHS trusts, covering:

  • rare auto-immune and auto inflammatory diseases;
  • rare hepatic diseases;
  • rare neuromuscular diseases;
  • rare malformation and developmental anomalies and rare intellectual disabilities;
  • rare and complex urogenital conditions;
  • rare epilepsies.

Furthermore, all proposed networks feature one or more NHS trusts in their membership, making the UK the most represented country in this initiative.  

In the aftermath of the EU referendum, an unhelpful climate of anxiety has emerged both for the NHS consultants leading these networks and for their fellow partner European clinicians, who now face total uncertainty around the future landscape of their planned cooperation.    

Significant blow

If as a result of the negotiations on a new relationship with the EU, the NHS were no longer allowed to take part in these networks, this would be a very significant blow for us and our international leading role in medical science. It would also affect the advancement of personalised medicine with the UK’s 100,000 Genomes Project and other flagship initiatives.   

This could have negative implications for patients by slowing down the speed at which innovation is taken up and translated into medical practice in the NHS. Effects could also be felt in our patients’ ability to take part in multi-national clinical trials, especially if the UK were no longer going to adhere to new EU regulation recently approved to harmonise and simplify procedures for the authorisation and the conduct of clinical studies taking place simultaneously in different countries.   

In turn, this could also negatively impact on the NHS’s ability to attract and retain some of the most renowned clinicians in the world, who often decide to work for the NHS due to its reputation in leading medical research.  

Clarity is needed as soon as possible in this area and the NHS European Office will be supporting NHS trusts through this period of uncertainty to try to ensure a positive way forward.

We will be in contact with both EU decision makers and domestic negotiators on this issue over the coming weeks and months.  

By Elisabetta Zanon, Director, NHS Confederation European Office.