Melanoma Patient Network Europe

Last update 5th May 2021

MPNEsupport Org 802492-1069, Sweden

The Burden of Melanoma  It's NOT 'just' skin cancer. Patient-driven research by MPNE. 


frequently asked questions

Why this survey

We know what a burden a Melanoma diagnosis means for patients and their families- and how it changes nearly everything about life. Unfortunately, others often don't. And we'd like to have ideas how to reduce that burden- solutions, not problems! 

What is this survey about

  • What type of mental burden Melanoma presents and how you adjust
  • How it impacts your life and what you found has helped you cope
  • How it makes you think about therapies
  • And for context, some general information about your Melanoma

Why should I as a melanoma patient answer that survey

We know the burden Melanoma presents for patients and their families- many others don't, they think: 'But it's just skin cancer'. We also know that overall survival might look good when you look at early stage Melanomas as a group- but that the mental burden can heavily impact on people and their lives. With this survey, we want to document what Burden in Melanoma looks like from our point of view- and share it to raise awareness that no, it is NOT 'just' skin cancer!  

Why should I as a Melanoma patient advocate answer that survey

We as patient advocates know that the impact of our work depends a lot on the quality of the evidence we can provide to support our demands. Many of us have conducted surveys and research to generate evidence- and we have all experienced that it's not quite as straight-forward as we thought it would be. Several factors tend to be tricky- being sure that answers are from real people while giving people the opportunity to honestly speak their opinion, the issue of ethics approvals even if we survey our own network and being able to ensure data security- in addition to technical know how: how to ask good questions, what are validated tools, and how to analyse and publish the data. We in MPNE are therefore aiming to set up a tool kit/ platform/ something to make it easier- our vision would be that anyone can generate the data they need for their own networks in a fast, reliable and high-quality way. Data, not opinions- in speed! 

What do you plan to do with what you learn

We believe that research is there to serve patients.

The learnings from this survey are there to inform our advocacy work and to come up with ideas how to reduce the burden for patients. Learnings will obviously be shared- the results from the survey will be analysed, published, shared via the MPNE forums and listed on the MPNE publication page where you also find all the other MPNE publications. We also hope that some of the data will help us to initiate more in-depth research projects in the future.

We also hope to learn how well this research feature works for our needs. We have seen how important it is to be able to accurately capture what matters to a group of patients, not just a single person. And having a tool for that would be invaluable!

What is Share4RARE 

Share4Rareis a European Project funded under the European Union's Horizon 2020 programme and is designed to help patients with Rare Conditions, including Rare Melanomas. MPNE is a Share4Rare project partner,

part of our efforts to better help patients with Rare Melanomas!

So is this just for people with rare melanomas?

No. This survey is for all Melanoma patients and carers of family patients with all types of Melanomas. The research feature of the Share4Rare platform also works independently of the forum- and is a new way to allow patient communities to drive their own independent, reliable and high quality research. And obviously, all patient communities will benefit from the learnings- and this will help also those patients with rare or very rare conditions to get started faster, just as as says: Share4Rare!  

Why do you run this as a research pilot on the Share4Rare platform

MPNE is project partner in Share4Rare, a Horizon 2020 project aimed to drive research for patients with rare conditions. However, the platform's research feature is of interest to any patient community that wants to do their own research- like us. Many of us have experienced issues with surveys over the years....if you want to give your participants the chance to remain anonymous, you can't be sure that everyone really is who they say they are. And only answered once......if you want to publish your results, they will ask for the approval by an ethics want data to be secure to protect patients....and it's not so easy to design and analyse good surveys either!

So we thought...what if there was a tool that patient organisations could just go to and that solved these issues with

  • data held securely (at FSJD, the hospital that coordinates the project)
  • validated participants who could answer anonymously (by confirming identity independent from the survey)
  • study approved by an ethics board (the FSJD ethics board)
  • support for study design and analysis (we are working on that right now!) 

so we helped build it. And NOW we are the first patient organisation that gets to test it!!!

Why is it called a research pilot

It is the first time we run a research study on the Share4Rare platform. So we want to learn about Melanoma as well as test the platform to see whether this could become a useful tool for our community. More and more of us run surveys on national level- anything from patient priorities to access to new therapies- we'd love to have a valuable tool for everyone.

what are the steps?

1. Validate yourself. You need a form of identification. Like your passport number and a photo of your passport or your national insurance number/ other medical identifier and a medical document with your name, date of birth to prove it. This ensures that the survey can only be completed by 'real' people. You'll get a confirmation emails for this- so check your inbox.

2. You will receive a personal invite to the survey in your inbox. Follow the link to fill in the survey. It's 4 parts, will take a total of about 50 minutes. Depending on how much free text you write :-)

3. SUBMIT.Super-super important to make sure the survey is sent in. 

Why is the survey in English, French and Romanian but not other languages

We all express ourselves best in our native language and we have seen that English surveys favour native English speakers. So we thought to change that and many of you have participated in the miniMac crowd translation.

When it then came to setting up the pilot on the Share4Rare platform, we realised that we actually needed to translate the entire platform.....which looked like a considerable amount of we thought we start with the languages we speak ourselves. For the record- translating all terms of the platform: 2 full days. Translating the survey- obviously depending on length but with testing of all functions- another 2 full days but distributed over weeks.

Your question not answered? Contact us here     

We Thank you for your contributions, let's reduce the burden of melanoma! 

The MPNE organisers Bettina, Gilly and Violeta and the colleagues from the Share4Rare team