Melanoma Patient Network Europe: Patient advocacy and communication

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Published: 22 Nov 2018
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Dr Bettina Ryll - Founder, Melanoma Patient Network Europe

Dr Bettina Ryll speaks with ecancer at the EADO 2018 congress in Barcelona about the Melanoma Patient Network Europe that she founded.

Dr Ryll discovered that, due to language and educational barriers, many patients are unaware of a lot of information that is out there and that the network seeks to bridge these gaps.

She also shares that more information can be found on the Melanoma Patient Network Europe website and that they host various events for anyone with interest with melanoma.

ecancer's filming has been kindly supported by Amgen through the ecancer Global Foundation. ecancer is editorially independent and there is no influence over content.

No-one grows up dreaming of becoming a patient advocate. So I went to medical school in Germany and in France and then did a PhD in molecular biology in the United Kingdom and only ended up in advocacy because my husband was diagnosed with stage 4 melanoma in 2011 and died of it in 2012. It was after that that I founded a patient network in Europe.

We’re not a typical patient organisation as you might think of a group meeting and telling each other stories, we are rather a network and a rather loose network. It is so that not every adult in Europe is actually able to read English, even just an English newspaper let alone medical information. What I found so hard was that because I had a medical degree and at the time was working at the university I could read medical updates and medical information. So we had access to knowledge that was as if it didn’t exist for many others and it somehow didn’t feel right. So my initial drive was to create a structure that alleviates that. So what we have now built is a network that is connecting country-specific networks in their own language across Europe and we train people, connecting these country-specific networks across, so that also patients who are not able to read information in English know what is going on in the melanoma world.

I think we have been pretty successful. We have been now here at EADO with sixteen people altogether who we trained in what melanoma is, what the treatments are but also about side effects, how healthcare systems work, so that they are able to really understand what’s going on.

How has this been welcomed by the organisation?

EADO has been extremely welcoming and extremely supportive. Actually we weren’t so keen to come this year because ESMO has just passed and we have our own event at the end of November so timing-wise it was very tight. But they have been very insisting and have been extremely helpful, so they helped us with registration and the patient advocates are invited to the speaker dinner tonight. They have been very welcoming throughout and it was a very positive experience. This is a very nice congress, the size feels good and the programme is interesting but not so dense that you do not have time to talk to people and discuss so it’s a fantastic opportunity to deepen a certain subject or go and ask questions and find out more. So it’s a good balance between information and actually exchange.

What is the best way to get involved and contribute to the Melanoma Patient Network?

We have a website where we announce our events and there’s a contact detail also on the website so that is just melanomapatientnetworkeu.org, so not very original. We have conferences, our main one being an annual conference in Brussels that is always open to anyone with an interest in melanoma.

You have also been working as chair of the ESMO Patient Advocates Working Group?

This is now my fourth and final year as the chair of the ESMO Patient Advocacy Working Group and I’m the first chair of this working group who is actually not an oncologist but an advocate. Now, a lot has happened in the last four years and by now patient advocates can become ESMO members. I’m someone who is very passionate about education and access to credible medical information and as an ESMO member that allows you to access just that. We now also have a separate, dedicated advocacy track at ESMO congresses that has been attracting more and more visitors and because we have found a format that allows advocates to attend scientific sessions in their specialty because there will be people with an interest in breast cancer or in colon cancer or, like myself, melanoma. So they will obviously want to hear about the scientific updates so they should be able to attend these sessions. Then we have unblocked the advocacy sessions that have addressed topics like pharmacovigilance, so drug safety, and we had cancer and fertility. We also had health economics, so we had a session on how to incentivise innovation at the last conference. We have had sessions on pseudoscience, so how do you deal with fake news, how can we keep our patients safe from false information. So we have a variety of topics that are of interest to a diverse community so we had several overflows full last time and it shows the success of such a set-up. So I’m very excited to see where this goes in the future and advocacy is definitely something and a space to watch.