Melanoma UK national listening project - what matters most to you?

• Melanoma UK and Thiscovery - working together to plan and run this project  ‍
• Supported by: Merck Pharmaceuticals 

What this means: Both organisations work together to decide how your survey answers are collected and used. Melanoma UK only gets reports with no names - they never see your individual answers. 

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Learn more about these organisations: 

• Melanoma UK: A charity providing information and support for people affected by melanoma and other skin cancers  ‍
• Thiscovery: www.thiscovery.org - A secure online platform for health research  ‍
• Merck Pharmaceuticals: Contributing funding to support this research 

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About Thiscovery: This survey is hosted on Thiscovery, a secure online platform for health research. Thiscovery is run by THIS Labs, an independent organisation that helps with health research. 

How to take part: 

1. Complete a short consent form 
2. Complete the survey about your melanoma or other skin cancer experiences 
3. Optionally, give us some basic information about you 

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The main survey asks you to: 

• Tell us about your experiences with melanoma or other skin cancer (if you've been diagnosed) 
• Tell us about supporting someone with melanoma or other skin cancer (if you're a carer/supporter) 
• Share your views on melanoma or other skin cancer prevention (if you're a member of the public) 
• Tell us what information and support has been helpful 
• Share what challenges you've faced 
• Tell us what you think Melanoma UK should focus on 

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Do I have to answer all questions? No. Skip any you don't want to answer. We get better information if you answer more but only answer what feels OK to you. 

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How long does it take? About 20 minutes. But you can take as long as you need. 

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Can I take breaks? Yes. Your answers are saved as you go. Use the same device and browser to continue where you left off. 

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Can someone help me? Yes. A family member or friend can help you use the website or read questions. But please give your own answers, not theirs. 

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Is there a deadline? Yes. The deadline is [INSERT DATE]. 

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Can I change my mind? Yes. You can stop taking part at any time without giving a reason. Email help@thiscovery.org if you want to withdraw. 

Benefits of taking part: 

• Share what's important to you about melanoma or other skin cancer support and services 
• Your answers might help improve experiences for people affected by melanoma or other skin cancer. We can't promise this will happen, but research sometimes leads to better information, support services, or campaigns 
• Your voice will be heard on something that affects your life or the lives of people you care about 
• Get an email summary of what we found out 

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Possible risks: 

• Some questions ask about experiences with melanoma or other skin cancer diagnosis and treatment. This might make you remember difficult times. 
• You might feel tired after answering questions for 20 minutes. 
• You can stop anytime if you feel uncomfortable. 

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If you need support: 

• Contact us: help@thiscovery.org
• Contact Melanoma UK: info@melanomauk.org.uk

How we use your answers: 

• We combine everyone's answers to understand what people think about melanoma and other skin cancer support and services 
• We use this information in a report for Melanoma UK 
• We might publish the results in reports or research publications 
• Nobody will be able to identify you in anything we publish 
• Results may help develop better support services, information resources, or campaigns 

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How you can learn about the results: If you give us your email address, we'll send you a summary of what we found.

What we collect: Your survey responses and basic background information (age group, region, etc.). We don't collect names or contact details unless you choose to provide them at the end. 

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How we use it: We analyse all responses together to understand patterns and insights. Melanoma UK receives only anonymous summary reports - never individual responses. 

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Keeping it safe: Your data is encrypted, stored securely, and only accessed by our research team. We follow research governance standards and UK data protection law. 

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Special category data: This research collects information about health and ethnicity. These are called "special category data" under UK law and need extra protection. We only use this information for the research purposes described here. 

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How long we keep it: 

• Your survey answers: We keep identifiable details for up to 6 months after the project ends, then remove names and keep anonymous answers for up to 2 years 
• Summary reports (with no names): We might keep these longer to help with future research 
• Your email (if you give it): Until you ask us to delete it, or automatically after 24 months if you haven't been active 

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Legal basis: We have a legitimate interest in conducting research that might help improve support for people affected by melanoma and other skin cancer. We've balanced this against your privacy rights and believe the research benefits justify the minimal privacy impact. 

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Your rights and choices 

Under UK data protection law, you have the right to: 

• Access - See what information we hold about you 
• Correct - Fix any incorrect information 
• Delete - Ask us to remove your information 
• Object - Tell us to stop using your information 
• Withdraw - Change your mind about taking part 

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Contact information 

• Contact us at help@thiscovery.org 
• Contact Melanoma UK at info@melanomauk.org.uk
• Data Protection Officer: dpo@thiscovery.org