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- 1. Why do weneed to talk about data? HIQA "National Health Information - Better data, better decisions" seminar 4th October 2017 Dr Natalie Banner Policy Adviser, Wellcome Trust & Understanding Patient Data @natalie_banner
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- 3. “It’s a one-waymirror: they know everything about you – but we don’t know what they’re doing with that” Focus group participant “The One Way Mirror”, Ipsos MORI 2016
- 4. People don’t knowmuch about how data is used 7 5 5 12 13 11 21 25 25 29 25 27 21 31 31 16 1 1 1 Academic researchers Commercial organisations NHS % A great deal % A fair amount % Just a little % Heard of, know nothing about % Never heard of Some awareness of health data usage, but little depth of understanding Source: Ipsos MORI/Wellcome Trust Base: 2,017 GB adults, aged 16+ How much, if anything, would you say you know about how the following organisations use health data for these purposes?* 33% 21% 16% 58% *See appendices for full question wording 56%18% I knew nothing about this until today. At first I was concerned, but now I’ve heard more I’m reassured. It’s important that data is used in this way by the NHS.
- 5. The importance oflanguage for being trustworthy
- 6. The importance oflanguage for being trustworthy
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- 8. “We owe itto citizens to enable them to understand data usage as fully as they wish, and ensure that information about how data is accessed, by whom, and for what purposes, is available.” Dame Fiona Caldicott National Data Guardian for Health and Care Review of Data Security, Consent and Opt-Outs (July 2016)
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- 10. Work streams Resources andtools • Case studies • Risks • Safeguards • FAQs • Myth-busters • Mapping data flows Developing advocates • Clinicians/HCPs • Patients • Public • Researchers • Policy makers • Media Horizon scanning • New digital technologies • Linking data across sectors • Balancing privacy and public benefit Social attitudes / public engagement Policy and governance to build public confidence
- 11. What do peoplewant to know about the use of patient data? Can I be identified? How is data kept safe? Do I have a choice? Doesn’t this happen already? Is there a public benefit? What are the risks? Will companies have access to health data? Why can’t I access my own health record?
- 12. Resources: ‘toolkit’ 1. Whyit is important to use patient data? 2. What happens to your data (and who sees it)? 3. What are the risks? 4. What are the safeguards? 5. Is the data identifiable? 6. What’s allowed? 7. What’s not allowed? 8. Why do companies need access to data? 9. What choices do you have? 10. How can you find out more?
- 13. Talking about usesof data “Primary” uses “Secondary” uses Individual care Improving health, care and services through research and planning
- 14. Talking about identifiability *anonymisedin accordance with the ICO code of anonymisation *
- 16. New digital technologies Diagnosisin primary care Specialist diagnosis Treatment Everyday monitoring Service planning + delivery Infection surveillance Understanding disease Fitness + ‘wellness’
- 17. Acknowledge the useof data HSE
- 18. Thank You For furtherinformation www.understandingpatientdata.org.uk @Patient_Data