How to use the speech recognition tool?
Every month, ERN-EYE invites you to meet an active person within the network through a short interview. This month, it's Russell Wheeler, ePag representative, who accepted to answer our questions.
Can you present yourself in a few words?
I’m Russell Wheeler, I’m patient advocate for the UK-based LHON society which is a rare eye disease. But in the ERN-EYE, I feel I’m representing all rare eye diseases. I spend most of my time with Eurordis, with other European level causes rather than just focusing on my own small rare disease area. We have to collaborate in order to progress.
What is your concrete role in the ERN-EYE network?
I could spend an hour talking about this but perhaps I’d say one of the main things is to keep things real. As an ePag member, a patient member of the network, our role is to constantly be a reminder to everybody why we are here, what the cause is. It’s surprising, even in the most technical of discussions how that role can sometimes be useful. When you have a philosophical difference between highly experienced clinicians, to step in and ask the question “what does this mean for the patient?”, is always the positive reminder I think.
In your opinion, what is the most important issue ERN-EYE could overcome?
Again, this is a big subject. I could spend a few days just even thinking about it. We have so many things to tackle. But for me, I think really we need to look much more at outcome-measures. I think that not just in Europe but around the world we're using outdated and old outcome-measures to measure treatments and to measure the progress of the disease when we have much better tools now. But unfortunately this hasn’t been properly validated.
What are the main challenges of the network?
Well, we are a diverse group, we have 29 HCPS from 13 different countries soon probably to expand. It’s a balance, it’s a little like the EU itself. How do you expend whilst not causing chaos and how do you administer that? I think that’s actually the biggest challenge. Just even the existence is a positive, we have to make sure we don’t just exist but that we actually deliver.
And the best advances?
So far? Well , I have to say, because it’s a very new network, I have to say the biggest early advance I think is in the ontology curation that we undertook last year in Odile which was a very technical exercise, it was quite difficult for patients to engage but again I think we have a valuable role to keep it real. For the network, to tidy up this important foundation for our work was a huge achievement actually.
In your dreams, what would ERN-EYE look like in 10 years?
In ten years, in my dreams? It would probably take longer than that, but I’d like to see all major eye centers involved in ERN-EYE then we are not talking about 29 centers but probably more than 100 centers which is a bureaucratic nightmare but I think we need to include everybody. That’s still doesn’t include the whole of Europe of course but we want at that point to have outreach so that each of these centers has responsibility for other centers and we form as a unit a center of excellence to propagate the best practice everywhere.
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