The Administrative Data Research Network

Reducing the
public’s data
trust deficit
The challenges of reducing
the public’s data trust
deficit
The experience of public engagement
across the Administrative Data
Research Network
Trazar Astley-Reid, Ilse Verwulgen, Judith Knight &
Chris Coates
Ilse Verwulgen & Trazar Astley-Reid | June 2015
2
1. About the Administrative Data
Research Network
2. The challenges
3. Preliminary research & results
4. Our approach
5. What’s next
Ilse Verwulgen & Trazar Astley-Reid | June 2015
3
1. About the Administrative Data
Research Network
Ilse Verwulgen & Trazar Astley-Reid | June 2015
4
What we do
A bespoke service for accredited
researchers
Linking de-identified administrative
data
Enable research which has the
potential to benefit society
Ilse Verwulgen & Trazar Astley-Reid | June 2015
5
Who we are:
A UK-wide partnership
Administrative Data Service University of Essex
4 Administrative Data Research
Centres
 England – University of Southampton
 Northern Ireland – Queens University Belfast
 Scotland – University of Edinburgh
 Wales – Swansea University
Ilse Verwulgen & Trazar Astley-Reid | June 2015
Ilse Verwulgen & Trazar Astley-Reid | June 2015
7
Who we work with
Accredited researchers
Trusted Third Parties
National Statistics Authorities
Data custodians
we make administrative data available,
we do not hold administrative data
Ilse Verwulgen & Trazar Astley-Reid | June 2015
8
Our Governance and Oversight
ADRN Board convened by UK
Statistics Authority – reports to
Parliament
Management Committee convened
by ESRC – reports to BIS
Approvals Panel of independent
experts
Ilse Verwulgen & Trazar Astley-Reid | June 2015
Our Mission and Vision
To benefit society and quality of life
through intelligent social research
To place the UK at the forefront of
innovative social and economic
research
Trazar Astley-Reid & Ilse Verwulgen | June 2015
2. The challenges:
Administrative data
Gathered by government while
rendering services to the public
Tax records
Educational records
Not given with consent to link for
research
Ilse Verwulgen & Trazar Astley-Reid | June 2015
11
The challenges:
care.data
NHS England programme to collect
GP records in central database
Combine hospital records and GP
records resulting in better care
Public backlash
Database available for sale
Unclear explanations
Consent?
Ilse Verwulgen & Trazar Astley-Reid | June 2015
12
3. Preliminary research & results
Improving access for research and
policy. Report from the
Administrative Data Taskforce 2012
Dialogue on Data. Exploring the
public’s views on using
administrative data for research
purposes, Ipsos Mori 2014
Ilse Verwulgen & Trazar Astley-Reid | June 2015
13
Administrative Data Taskforce
Report
Public support for and confidence in
the research use of administrative
data can only develop if there is clarity
about the purpose of the research, the
data to be processed, and the
safeguards that will be in place to
prevent any abuse of such data.
Ilse Verwulgen & Trazar Astley-Reid | June 2015
14
Dialogue on Data
7 focus groups across the UK
Two workshops each
October-November 2013
136 members of the public, 20
experts
Presentations, discussions with
experts, round table,…
Ilse Verwulgen & Trazar Astley-Reid | June 2015
15
Dialogue on Data: findings
 Transparency
 Summaries and case studies
 Research must have public benefit
 Independence is paramount
 Data must be de-identified and secure
 Linkage is secure
 Strong opposition to commercial usage
 Understandable accurate messages
Ilse Verwulgen & Trazar Astley-Reid | June 2015
4. Our approach
Involve public in decision-making and
governance
Lay members on Approvals Panel and ADRN
Board
Consultation, not fait accompli
Talk to those who have concerns
Ilse Verwulgen & Trazar Astley-Reid | June 2015
17
Be prepared for intense scrutiny &
spin
Show public benefit
Case studies
One voice for the Network
Make it visual
Ilse Verwulgen & Trazar Astley-Reid | June 2015
18
Our approach
Training researchers to do public
engagement
Transparency online: website & social
media
Events
Animations
Ilse Verwulgen & Trazar Astley-Reid | June 2015
19
Ilse Verwulgen & Trazar Astley-Reid | June 2015
20
What’s next?
Citizen’s panel
Workshops with communities
Working proactively with the media
Continuing to include lay people in
our governance structure
Ilse Verwulgen & Trazar Astley-Reid | June 2015
21
Any Questions?
Ilse Verwulgen & Trazar Astley-Reid | June 2015
22
Get in touch
www.adrn.ac.uk
comms@adrn.ac.uk
Twitter: @ADRN_UK
Ilse Verwulgen & Trazar Astley-Reid | June 2015
23
ADDENDUM
Ilse Verwulgen & Trazar Astley-Reid | June 2015
24
Case studies: examples
Ilse Verwulgen & Trazar Astley-Reid | June 2015
25
Gearing an entire country for
diabetes care and research
 Scotland has established a nationwide
research programme that aims to position the
country at the forefront of diabetes care
internationally with the added benefit of
applying findings from basic science to
enhance human health and well-being
 Electronic data linkage and collaboration with
every hospital and all 1200 general practices
has created a clinical informatics system for
all 239,000 people with type 1 and type 2
diabetes in Scotland.
Trazar Astley-Reid & Ilse Verwulgen | June 2015
26
What did it tell us?
The prevalence of diabetes is
currently 4.9%, and rising by
10% per annum.
Trazar Astley-Reid & Ilse Verwulgen | June 2015
27
Image
©Wikipedia
How did data help? 43% reduction in laser treatment for sight threatening
retinopathy over a seven year period (Diabetic Medicine 2009).
Trazar Astley-Reid & Ilse Verwulgen | June 2015
28
How did data help?
 This systematic approach to diabetes care has
been associated with year on year
improvements in care processes and
outcomes;
 40% reduction in amputations
 Such data are rarely available on a
nationwide basis.
Trazar Astley-Reid & Ilse Verwulgen | June 2015
29
Helping the most deprived
areas
 Since 2004, the University of Oxford has
been using data from most government
departments to create the Index of Multiple
Deprivation. The information they use
includes:
 health records from the NHS
 unemployment and tax data from Her
Majesty’s Revenue and Customs (HMRC)
 benefits information from the Department
for Work and Pensions (DWP)
Trazar Astley-Reid & Ilse Verwulgen | June 2015
30
Trazar Astley-Reid & Ilse Verwulgen | June 2015
31
The most deprived area in
England is Jaywick, a small
seaside village in Essex
©metro.co.uk
Trazar Astley-Reid & Ilse Verwulgen | June 2015
32
The most deprived area in England
was Jaywick, a small seaside village
in Essex
Over 5 million people lived in the
most deprived areas in England
98% of the most deprived areas are
in cities
Trazar Astley-Reid & Ilse Verwulgen | June 2015
33
©inclusion ventures
We include young people in decision making and have a commitment to community
based solutions.
Young people are provided with a safe environment and interesting activities that they
can take pride in. Inclusion Ventures offers opportunities for our young people to become
responsible members of their community. We support education, develop health and
wellbeing, and increase aspiration.
Trazar Astley-Reid & Ilse Verwulgen | June 2015
34
How did data help?
Governments and local councils can
now target the most needy areas
with funds and resources such as:
Improved health services
The Sure Start educational
programme
Emergency services
Trazar Astley-Reid & Ilse Verwulgen | June 2015
35
Explaining data with a game
Title | Prepared by | Date
36
Guess who trumps?
ADRC-England developed a
game that teaches children
how to analyse data
collections
Ilse Verwulgen & Trazar Astley-Reid | June 2015
37