Interview of the month - Pr David Keegan

In your opinion, what is the most important issue ERN-EYE could overcome?

We need equality of access to care particularly rare eye care across Europe and there is great discrepancy in how patients are cared for amongst the different countries and even within those countries. The ERN-EYE has an opportunity to improve that access not just with expertise but also to supportive measures, therapeutics and research.

What are the main challenges of the network?

The challenge of the network is keeping the enthusiasm going as it is set up, I think in that regard we've been very lucky with the leadership of Hélène Dollfus but to sustain that we're going to need extra funding, coherence and guidance from the European Commission over the coming years to mature the ERNs to achieve all their goals. I've no doubt with all the expertise we have within our ERN  and under Hélène’s leadership we will attain those goals but it must to be guided centrally and given the support to be able to do so.

The main challenges are keeping that coherence and keeping people engaged if they sense they're not getting out of the ERN what they feel they should, ensuring that all the countries within the ERN are sure that they're getting a benefit from ERN membership. Finally, to keep the key pillars of the ERN, like the CPMS, the Clinical Patient Management System,  going and operable.  To that end I think there are some innovations in the ERN-EYE which have been beneficial in that regard. 

And the best advances?

Undoubtedly while it had a troubled start, the Clinical Patient Management System really is the best benefit. Patients now don't normally need to travel themselves to get that expert opinion that they had to do in the past that is now provided by their experts at home collaborating with experts across Europe. In addition, what has really enhanced knowledge sharing is the development of the GREET-Grand Rounds program and RED-VAR, the discussion regarding variants of unknown significance and difficult to interpret variants as a result of genetic testing.

They have been key breakthroughs and along with collaborative research initiatives such as the "See My Life" project, which is a holistic total eye care and life care view of patients who suffer rare eye disease, are undoubtedly the sort of signature breakthroughs of the ERN-EYE in its first few years.

In your dreams, what would ERN-EYE look like in 10 years?

In 10 years’ time, I would really like to see an ERN-EYE that is fully integrated across Europe with the sole purpose of equal access to care and expertise for all patients with rare eye disease and within that will provide a model for care of all eye diseases. Ideally then you would have targeted elimination of blindness in the previously unpreventable blindness cohort which often underpins rare eye disease.

The prospect of tackling that and having specific targets such as less than 50% of that burden existing in 10 years compared with now becomes possible. 

It's an audacious goal but when you're harnessing all that expertise across Europe we can be bold enough to have that grand ambition.

From co-ordinated clinical care comes enhanced research opportunities and leveraging that to develop new therapies and interventions becomes possible.

Watch the interview on YouTube