National Health Information Seminar: Better data, better decisions October 2017

1. Why do we need 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

2. 2

3. “It’s a one-way mirror: 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 know much 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 of language for being trustworthy

6. The importance of language for being trustworthy

7. ‘…’

8. “We owe it to 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)

9. www.understandingpatientdata.org.uk
@Patient_Data

10. Work streams
Resources and tools
• 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 people want 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. Why it 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 uses of data
“Primary” uses
“Secondary” uses
Individual care
Improving health,
care and services
through research
and planning

14. Talking about identifiability
*anonymised in accordance with the ICO code of anonymisation
*

16. New digital technologies
Diagnosis in
primary care
Specialist
diagnosis
Treatment
Everyday
monitoring
Service planning
+ delivery
Infection
surveillance
Understanding
disease
Fitness +
‘wellness’

17. Acknowledge the use of data
HSE

18. Thank You
For further information
www.understandingpatientdata.org.uk
@Patient_Data