The document summarizes the care.data program in the NHS which aims to improve patient care through better use of data. It will provide comprehensive and timely healthcare data to patients, professionals, providers and researchers. The program will extract primary care data from GP practices with patient consent to join it with other hospital data. It is being rolled out in phases and aims to eventually include social care and community health data. Strict information governance standards are in place to protect patient privacy and data security. The goal is to help identify variations or gaps in care quality, monitor outcomes over time, and support health services research.

1. Building choice of high quality support for commissioners
care.data
High quality care for all: now and for future generations
Dee Moore
Intelligence Specialist
September 2013
1

2. care.data - Agenda
• NHS Changes
• What is care.data
• Reality
• Why care.data?
• Starting point
• Growth
• Information Governance & Confidentiality
• Data Pipes
• Forward Timeline

3. The NHS is changing
Francis Report Recommendations (2013)
http://www.midstaffspublicinquiry.com/sites/default/files/report/Executive%20summary.pdf
“Develop and share ever improving means of measuring and understanding the
performance of individual professionals, teams, units and provider organisations for the
patients, the public, and all other stakeholders in the system.”
“A coordinated collection of accurate information about the performance of organisations must
be available to providers, commissioners, regulators and the public, in as near real time as
possible, and should be capable of use by regulators in assessing the risk of non-compliance. It
must not only include statistics about outcomes, but must take advantage of all safety related
information, including that capable of being derived from incidents, complaints and
investigations.”
“If the culture of those engaged in and with the NHS is to change, information must be made
available about the performance and outcomes of the service provided to enable patients to
make treatment choices and have a proper understanding of the outcomes for them.”
We thought we had taken steps to improve the patients’ perception of the hospital care. Accordingly,
when we saw the results, we were looking at historic information. How could we measure such
feedback when the data was so old? The Francis Report, (February 2013)
“All our data is secondary use; none of it is used for the purpose for which it was collected. When it
comes to the big data collections, their quality and uptake, we have found that one of the most
important levers is giving people who entered the data the chance to see it.” The Round Table
Report, (February, 2013)

4. What is care.data?
• care.data is a modern knowledge service which will
provide comprehensive, timely and accurate data for:
• Patients, carers and the public
• Health, care and health professionals
• Providers, commissioners, researchers, regulators

5. TextText
World class data
Open Outcomes
Patient Voice
and Insight
Customer choice
and control
Transparency
Participation
Securing a world class health
service
High quality
care for all
5

6. And what does this mean in real terms?

7. Trying to join the dots

8. Joining the dots further
Pregnancy
Letters
Scan
Miscarriage
GP Stressful period

9. Why?
• To avoid mistakes of the past and improve patient care
• the elimination of variation in the quality and equity of
services provided across the country
• the identification of wasteful duplications
• in service and gaps in care
• the detection of systemic failings

10. Why? (continued)
• monitoring of outcomes
• trends over time
• comparisons of different patient pathways
• the development of predictive models
• Visibility of where NHS has been under-investing in different
areas of the country, in different groups of people, and in
different diseases and conditions.

11. Our starting point for world class
data
• Hospital Episode Statistics (HES)
• world-class data warehouse containing
details of all hospital activity in England
• In operation since 1989
• Primary purpose is healthcare analysis for
the NHS and government
• Invaluable research tool
Dame Edith Körner (1921-2000)

12. UNCLASSIFIED

13. NHS England is commissioning the care.data programme on
behalf of the ISCG
All parts of the English health
and care system support the
modernisation of care through
the better use of data and
technology
The role of the ISCG is to commission services within an agreed strategic
framework; and then to monitor delivery against set objectives

14. The care.data programme is designed to comply with the
highest standards of information governance:
Human
Rights Act
NHS
Constitution
Data
Protection
Act
Health &
Social
Care Act
2nd
Caldicott
Review

15. Five outbound flows of data from CES
Health and
care
providers
Health and
Social Care
Information
Centre
Statutory
Disclosures
e.g. s251
Patient
Health Services
Researchers
Providers, Com
missioners, Publ
ic Health
England etc.
Published data

16. care.data patient data flows
• Patients have three options:
HSCIC
data
recipients
2. Block their primary care data being extracted from their GP practice
but consent to other data to flow from HSCIC (e.g. hospital data)
GP
practice
3. Block their primary care data being extracted from their GP practice
and block other data flowing from HSCIC (e.g. hospital data)
1. DEFAULT: Consent to their primary care data being extracted from
their GP practice and consent to their data flowing from HSCIC
1
2
3

17. care.data in progress
Current
Phase 3
Phase 2
Phase 1
• GP data
• Mental health data
• Detailed
hospital data
• Clinical audit data
• Disease registry data
• Community health
services data
• Social care data
2012/13 2013/14 2014/15 2015/16
Current position:
Local initiatives and
national registers
operate largely in
isolation
Potential benefits from
prescribing in care
homes and home
monitoring.
Some leading hospital
sites capture detailed
data
Patients with LTCs in
active participation.
Leading hospital sites’
prescribing results.
Work with social care
data pioneers.
Patients with access e.g.
to pathology results.

18. Resources
Website www.nhs.uk/caredata
On-line toolkit with Patient FAQs
Look in your GP practice for patient leaflets and posters