Help shape the use of genomic information in adult population healthcare

• Thiscovery and RAND Europe - working together to plan and run this project
• Genomics England - funding this research

This project has had RAND Europe Research Ethics Committee approval, ref. XXXX

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What this means:

• RAND Europe is the data controller for your survey responses. This means they decide how your survey answers are used and are legally responsible for protecting your information.
• Thiscovery is the data processor for survey responses. This means they handle the technical side of collecting your answers on behalf of RAND Europe.
• For contact preferences: If you choose to give Thiscovery your name and email to hear about future research opportunities on Thiscovery or receive participation confirmation, Thiscovery becomes a data controller for that specific information.

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Learn more about these organisations:

• 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. www.thiscovery.org
• ‍RAND Europe is a not-for-profit research institute whose mission is to help improve policy and decision making through research and analysis. www.randeurope.org
• Genomics England: is a government funded company owned by the Department of Health and Social Care (DHSC), whose vision is a world where everyone can benefit from genomics healthcare. www.genomicsengland.co.uk

How to take part:

1. Complete a short consent form
2. Complete the survey about your views on genomics in practice
3. Optionally, provide some basic information about your professional background, gender and ethnicity
4. Optionally, provide your contact details to be invited to a follow-up online workshop about genomics (you would be compensated for your time)

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The main survey asks you to:

• Your current familiarity with genomics and genetic testing
• If and how you currently use genetic information in your role
• Your views on the potential impact of genomics in primary and community care
• What support you need to help patients understand genetic information

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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 10 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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Is there a deadline? Yes. The deadline is XXX.

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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 your professional perspective on genomics implementation
• Your insights will directly inform Genomics England's research programme around integrating genomics into primary and community care
• Your feedback may help shape training programs, resources, and support services for healthcare professionals
• Contribute to ensuring genomics is implemented in ways that work for frontline healthcare professionals
• Get an email confirming your participation for your CPD

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Possible risks:

• The survey may highlight gaps in your knowledge about genomics - this is valuable feedback and reflects the current state of genomics education rather than your individual competence
• Some questions ask you to consider implementation challenges, which might feel frustrating if you already face resource constraints in your role
• You can stop anytime if you feel uncomfortable

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If you need support:

• Contact us: help@thiscovery.org

How we use your answers:

• RAND Europe will combine everyone's answers to understand what primary and community care professionals think about integrating genomics into practice
• RAND Europe will write up the findings, alongside findings from other parts of the wider research programme, into a report for Genomics England
• Your individual survey responses (with identifying details removed) are used by RAND Europe for their research and analysis
• The findings will be used by Genomics England to develop their research strategy and approach. These may in the future also inform implementation strategies, training programs, professional resources, and policy recommendations
• Research findings may be published in academic journals or reports (with no identifying information)

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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 about genomics and your professional practice and basic background information about your role, gender and ethnicity (all optional). 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 collect and securely transfer your survey data to RAND Europe. RAND Europe analyses the data and creates reports for Genomics England. RAND Europe may conduct additional analysis for their research purposes.

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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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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): Thiscovery 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
• RAND Europe will keep the data according to their retention policy (up to 12 months after the project ends)

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Legal basis:

• ‍For survey responses: RAND Europe have a legitimate interest in conducting research that will help improve genomics implementation in healthcare. They’ve balanced this against your privacy rights and believe the research benefits justify the minimal privacy impact.‍
• For contact preferences: Your consent, which you can withdraw at any time.

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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 Thiscovery at help@thiscovery.org
• RAND Europe Richard Milne, Research Lead at rmilne@randeurope.org

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