Your privacy - what you need to know (1-minute read)
- What information we collect: Your survey answers about melanoma and other skin cancer experiences and some basic details about you (like age group and region)
- Important: This survey includes questions about health and ethnicity, which need special protection under UK data protection law
- Who sees your personal details: Only our research team - Melanoma UK (who commissioned this research) gets anonymous reports only
- Your rights: You can see, correct, or delete your information anytime
- How long we keep it: 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
Questions or concerns: Email help@thiscovery.org
Want full details? Keep reading below.
Your data journey - what happens to your information
While you're taking part
- Only our research team sees your answers with your details
- We keep your name separate from your answers
- All information is encrypted and stored safely
In our report
- Thiscovery looks at all your answers and creates a report
- We mix your answers with everyone else's - no one can tell which ones came from you
- Melanoma UK never gets your individual answers - only reports where no one can tell who said what
What this means for you
- You won't be contacted for sales because of this research
- Your answers can't be traced back to you in any reports
- We follow strict rules to keep your information safe
What information we collect
Your answers about:
- Your experiences with melanoma and other skin cancer diagnosis, treatment, and support
- What information and support you've found helpful
- What challenges you've faced
- What would help improve experiences for people like you
- What you think Melanoma UK should focus on
Basic information about you:
- Your age group and gender
- Your ethnic background
- The region of the UK you live in
- Your relationship to melanoma and other skin cancer (diagnosed, carer/supporter, or member of the public)
Your contact details (only if you choose):
- Your name and email address
- Only if you want to hear about results, learn about Melanoma UK activities, or hear about other research opportunities from Thiscovery
Important: We don't ask for your name during the survey. But if someone looked at all your answers together, they might be able to guess who you are. This is unlikely but could happen.
Making your answers anonymous
How we protect your identity:
- We remove your name and anything that could identify you before writing our report
- We check all comments to remove identifying details (like specific hospital names or clinician names you mention)
- Even if someone read the report, they couldn't tell which answers were yours
Quality checks: We might check some answers to make sure our research is high quality. If we do this, we only use the minimum information needed and delete it afterwards.
Why we can use your information
This is research: We're doing this research to understand what matters most to people affected by melanoma and other skin cancer. This helps Melanoma UK better understand what people need and want from a charity supporting those affected by melanoma and other skin cancers - it's not for sales, marketing, or targeting you.
We're allowed to use your information because:
- 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
- We keep your information as safe as we can
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.
Your contact details: Only if you choose to give them to us. You can change your mind anytime.
Who sees your information
We will share information with:
- Melanoma UK - they work with us to plan the research and get anonymous reports only
We will NOT share information with:
- Merck Pharmaceuticals (who are partly funding this research)
- NHS organisations
- Other healthcare providers
- Marketing companies
What Melanoma UK receives:
- Anonymous summaries and reports only
- No individual survey responses
- Comments with all identifying details removed (including hospital names, clinician names, or specific locations)
What Melanoma UK will NOT receive:
- Your personal details or information
- Individual survey responses that could identify you
- Any information that could tell who you are
Your contact details are completely separate:
The survey data and your contact details (name and email) are handled differently:
- Survey data: Melanoma UK never gets your individual answers - only reports where no one can tell who said what
- Contact details: Only collected if you choose at the end. You decide who can contact you. This is separate from your survey answers.
How long we keep your information
- 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 about melanoma and other skin cancer support and services
- Your email (if you give it): Until you ask us to delete it, or automatically after 24 months if you haven't been active
Want us to delete your information? Email us and we'll do it quickly.
Your choices
You can:
- Stop taking part at any time
- Skip questions you don't want to answer
- Ask to see what information we have about you
- Ask us to fix wrong information
- Ask us to delete your contact details
- Complain if you're not happy
To do any of these: Email us at help@thiscovery.org
Important things to know:
- If you don't give us your contact details, we might not be able to remove your survey answers later (because we won't know which answers are yours)
- Once we create anonymous summaries for Melanoma UK, we can't remove your contribution from those reports
How we keep your information safe
We keep things separate:
- Your contact details are kept separate from your survey answers
- Your survey answers use a number instead of your name
- This means we can't link your name to your answers
We use secure systems:
- All information is encrypted (scrambled) and stored safely
- Only the research team can see your information
- We follow strict security rules
- We use certified deletion when we remove data
Important: Sending information over the internet is never 100% safe. We do our best to protect it, but we can't promise complete security.
Research results
If you give us your contact details, we'll tell you:
- What the research found out about what matters most to people affected by melanoma and other skin cancer
- How Melanoma UK is using it to improve information resources, support services, and campaigns
Contact us
Your agreement
By taking part in this survey, you agree that:
- Melanoma UK can use your answers for research about melanoma and other skin cancer experiences and support needs
- Thiscovery can collect your answers for Melanoma UK
- You understand your information will be shared with Melanoma UK as described above
- You understand this includes questions about health and ethnicity which are special category data under UK law
- You can stop taking part at any time.
Thank you for helping us understand what matters most to people affected by melanoma and other skin cancer.
