Your privacy - what you need to know (1-minute read)
What information we collect: Your survey answers about genomics in your professional practice and some basic details about your professional role.
Who sees your personal details: Our Thiscovery research team and the RAND Europe research team. RAND Europe will receive your survey responses separately to your name and email address (if you have given your consent to be contacted by RAND Europe).
Your rights: You can see, correct, or delete your information anytime (before data is anonymised and sent to RAND Europe).
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. RAND Europe keeps anonymised research data for up to 12 months after the project ends.
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
- We collect your answers securely on the online platform
- Your survey responses are encrypted and stored safely
- Only our Thiscovery research team can access your information
After you complete the survey
- Thiscovery securely transfers your responses to RAND Europe, separating your survey responses from your name and email address (if provided)
- RAND Europe analyses all survey responses
- RAND Europe creates reports and analysis for Genomics England
- Thiscovery deletes identifiable survey data after secure transfer (within 6 months)
In the reports and findings
- RAND Europe looks at everyone's answers to understand healthcare professionals' views
- Reports include anonymous summaries and quotes with any identifying information removed
- Findings may be published in academic journals or reports (completely anonymous)
- Your individual responses cannot be traced back to you
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 after we remove identifying details from the data we transfer
- We and RAND Europe follow strict data protection rules to keep your information safe
What information we collect
Your answers about:
- Your views on using genetic information in healthcare
- How you currently use or could use genetic information when supporting patients
- What support you need for, and what barriers you face in, accessing and using genetic information as part of your practice.
Basic information about you (all optional):
- Your professional role (e.g. GP, Practice Nurse)
- Years of experience in your current role
- The region of England where you work
- Age group, gender and ethnic background
Your contact details (only if you choose):
- Your name and email address
- Only if you want to hear about results, be invited to a follow-up online workshop, get participation confirmation, or learn about other research opportunities
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:
- Your name and anything that could identify you is removed before analysis and reporting
- Published reports use only anonymous summaries and carefully edited quotes
- Your answers are combined with answers from many people so individual responses can't be identified
- All free-text comments are checked to remove identifying details (like specific workplace names you might mention)
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 healthcare professionals' views to inform Genomics England's approach to their research study and future work on introducing genomic testing and information into healthcare. This will help improve genomics services, training, and support - it's not for sales, marketing, or targeting you.
We're allowed to use your information because:
- RAND Europe has a legitimate interest in conducting research that will improve genomics implementation in healthcare
- They have balanced this against your privacy rights
- The research benefits (better training, resources, and implementation strategies) justify the minimal privacy impact
- All protections are in place to keep your information safe
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:
- RAND Europe gets your complete survey responses (this is the main purposes of the research). This includes free-text comments (after we check and remove any identifying details).
- Genomics England gets an analysis reports with anonymous summaries only.
- Academic or policy publications may include anonymous findings.
We will NOT share information with:
- NHS organisations or trusts (unless in completely anonymous published reports)
- Marketing companies
- Any commercial organisations
Your contact details are completely separate:
The survey data and your contact details (name and email) are handled differently:
- Survey data: RAND Europe gets your individual answers (with your name removed) to undertake their analysis
- Contact details: Only collected if you choose at the end. You decide who can contact you. We store these details securely and send them to RAND Europe separately from your survey answers.
This separation means:
- RAND Europe cannot connect your email to your specific survey answers
- Thiscovery cannot see which survey answers belong to which email address
- Neither organisation can identify you from your survey responses
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. RAND Europe keeps anonymised research data for up to 12 months after the project ends for research purposes and to support future genomics implementation work
Summary reports (with no names): These may be kept longer to support future genomics research, policy development, and healthcare improvement initiatives
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.
Before anonymisation: Contact Thiscovery and we'll delete it quickly
After anonymisation: We can't remove your contribution from anonymous datasets or published reports, but this data cannot identify you
Your choices
You can
- Stop taking part at any time without giving a reason
- 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 transfer your anonymous survey data to RAND Europe, we can't get it back or delete it from their systems. RAND Europe will have their own procedures for handling data deletion requests
- Once RAND Europe create anonymous summaries of the survey response, they can't remove your contribution from those reports (but you can't be identified)
How we keep your information safe
We keep things separate:
- Your contact details (if provided) are kept separate from your survey answers
- Your survey answers use a reference 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 Thiscovery and the RAND Europe research teams can see your information
- We follow strict security rules
- We use certified deletion when we remove data
- Transfer security: Data is encrypted during transfer to RAND Europe. RAND Europe follows their own data security procedures
- 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 about healthcare professionals' views on genomics
Contact us
Questions about the survey: Email us at help@thiscovery.org
Questions about how your survey data is used (data controller): RAND Europe Data Protection Officer: REdpo@rand.org.
Complaints: If you're not happy and want to contact someone independent, please contact Thiscovery research.governance@thiscovery.org or RAND Europe Data Protection Officer REdpo@rand.org.
Data protection problems: Information Commissioner's Office - ico.org.uk
Your agreement
By taking part in this survey, you agree that:
- You understand this is research about healthcare professionals' views on genomics
- RAND Europe (as data controller) and Thiscovery (as data processor) can collect and use your survey answers for this research
- All organisations will follow UK data protection law to keep your information safe
- Your anonymised responses may be used in reports and publications
You can stop taking part at any time.
If you choose to provide contact details:
- You separately consent to being contacted based on your preferences
- This consent is separate from the research and can be withdrawn independently
Thank you for helping us understand how to better implement genomics in primary and community care.
