caredata Presented by Chris Roebuck Director of Benefits and Utilisation Who we are Established by the Health and Social Care Act 2012 An Executive Non Departmental Public Body for Department of Health ID: 600927
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Slide1
HSCIC data and
care.data
Presented by Chris Roebuck, Director of Benefits and UtilisationSlide2
Who we areEstablished by the Health and Social Care Act 2012
An Executive Non Departmental Public Body for Department of HealthBringing together functions from:The NHS Information Centre
Connecting for Health Local Service Provider functionsNHS ChoicesProviding a range of technology and information servicesWe employ over 2,100 staff, based across 19 locations in England
Act gave us responsibility for
collecting England’s Health and Care data Slide3
What is care.data?Slide4
What is care.data?
Programme
of work which aims to ensure that more joined up data is made available to improve the quality, safety and effectiveness of local care services.
NHS England
commissioned
the HSCIC to build on existing data services and expand them to provide linked data that will eventually cover all care
settings. Slide5
What is the current view?Slide6
What do these current data tell us?
Anonymised output from these record level data sets very powerful
Insight into A&E
Summary Hospital-level Mortality Indicator (SHMI)
Aggregated data used in response to 100s of Parliamentary Questions a year
Example of data use – reducing length of stay for breast surgerySlide7
Example: A&E Who goes to A&E?
Data Source: HSCIC Hospital Episodes Statistics (HES) (age on arrival). Data for 2012/13 are
provisional. HES is not as complete as WSitAE, but is a richer source of information, containing details for each attendance. Type 1 departments may make a disproportionate contribution to the numbers for all department types in HES as they have a greater
coverage
than other department types
when
compared to WSitAE.
Footnotes (page 49):
4.
Highest percentage of A&E attendances
are for very young children
and those
in their early twenties.
7Slide8
Who
goes to A&E?
In
each of the last
5 years
at least twice the number
of attendances in all departments have been by those living in the most deprived 10% of areas than those in the least deprived 10%.
Data Sources
: HSCIC
Hospital Episodes Statistics
. Data for 2012/13
are
provisional.
Type 1 departments may make a disproportionate contribution to the numbers for all department types in HES as they have a greater coverage than other department types when compared to WSitAE.
Department for Communities and Local Government
Index of Multiple Deprivation
.
8
Most deprived 10%
Least deprived 10%
Percentage of HES A&E attendances
by deprivation
(
IMD)
deciles
of residenceSlide9
Data Source: HSCIC Hospital Episodes Statistics. Excludes planned attendances.
Data for 2012/13 are provisional. Type 1 departments may make a disproportionate contribution to the numbers for all department types in HES as they have a greater coverage
than other department types when compared to WSitAE
.
Number of attendances by time in A&E (
hours:minutes
),
by 10 minute time intervals,
and outcome, 2012/13.
9
By 10 minute interval the
largest number of
all attendees spent between
3 hours
51 minutes
and 4
hours in A&E. Also,
a greater proportion are admitted
to hospital during
this period.
What happens while they are there?Slide10
Improvements to breast care surgical pathway
A national programme to improve the breast care surgical pathway has reported improvements to quality of care and large reductions in the length of hospital stays for breast cancer surgery patients after it used Hospital Episode Statistics (HES) data from HSCIC.NHS Improvement (now NHS Improving Quality) took the information which was analysed by the National Clinical Analysis and Specialised Applications Team (NATCANSAT) and used it, along with other activities, to streamline processes for the breast care surgical pathway. Between 2007-08 and 2011-12, this contributed to
:
improved patient experience (quality of care)
increased proportion of planned surgery done as a day case from 27 per cent to 40 per cent.
reduced average length of hospital stay by 50 per cent.
reduced bed days by 49 per centSlide11
What is the future view?Slide12
What are the intended benefits?
care.data will:
Ensure the highest standards of care and clinical safety are consistently met
throughout the
NHS.
Help us
understand what happens to people
, especially those with long term conditions who are cared for away from
hospital.
Provide us with the
vital information needed
to assist and
support
research
.Slide13
What happened earlier this year?
Jan 2014 - national awareness-raising
campaign.
Feb 2014 - NHS England
announced
six month extension
to
better understand the views and concerns of professionals, patients, and the
public.
Listening exercise conducted to listen to
feedback
and
ensure this
informed the future direction of
care.data
.Slide14
What has happened since ?
HSCIC:Committed to a range of improvements around transparency and managing data access.Published a review of data releases by the NHS Information Centre.
Started quarterly publication of a register of data releases. Slide15
Who was involved in the listening exercise?Slide16
What did people tell us?
They want to know:More on the risks
and benefits of information sharing.How to object to
sharing their data.
Who will receive data and
why.
Why information
that can identify people is
being
used.
How their data is controlled and protected.Slide17
What has happened since ?
The Care Act: Confirmed there was a statutory basis for sharing information to better track outcomes across health and care
services.Said that data could only be made available to organisations where they can demonstrate a
clear purpose related to the provision of health care or adult social care, or the promotion of
health.
Put the role of the Confidentiality Advisory Group (CAG) on a statutory footing which includes advising on HSCIC disclosures.Slide18
What has happened since ?
Care.data:Restructured the programme.Rebuilt programme board.Established the Advisory Group.
Agreed to a phased introduction with a full evaluation ahead of any national roll out.
Confirmed
that access
will
only be
through
a secure data
facility.Slide19
Research:Market research company, Ipsos MORI, appointed to capture
feedback from the public and professionals.Public research events and
GP/practice manager workshops held in July.Results currently being analysed.
Research and listening exercise is informing development of new materials for patients and GP practices.
What has happened since ? Slide20
Who are the pathfinder practices?
GP practices within the CCGs of Somerset; West Hampshire; Blackburn with Darwen; Leeds North; Leeds South and East; and Leeds West will be expected to take part in the “pathfinder” stage of the programme.
No obligation on them to take part, but desire to include as many as possible.Slide21
What are the pathfinder practices?
Will test different ways of communication with patients in their areasWill test, evaluate and refine all aspects of the data extraction before any national roll
out.Pathfinders will be supported through local groups
such as
Healthwatch
, Patient Participation
Groups
and community and voluntary sector
organisations.Slide22
Ensure there is public awareness of care.data including how
health data may be used, the benefits and risks.
Make sure pathfinder patients and the public know they have a choice, that they understand
their choices and
how to object/’opt out
’.
Assess
the burden on
GPs
,
practices
and the
CCGs.
What are the pathfinder objectives?Slide23
Dame Fiona Caldicott’s Independent Information Governance Oversight Panel (IIGOP) has agreed to work with the programme on the quality assurance of the processes which are being developed to identify, work with and monitor
pathfinder practices.The decision to extract data will depend on the evaluation of pathfinder readiness
measured against the pathfinder objectives.The decision to proceed to data extraction will be taken by the care.data Programme Board based on the evaluation and advice from
IIGOP.
How will decisions be made? Slide24
What is the primary care extract?
NHS England directed HSCIC to collect, process and link primary care data to Hospital Episode Statistics (HES)General Practice Extraction Service (GPES) will
be the default system used to extract data from GP practices.
GPES
Independent Advisory Group (IAG)
has recommended
the
extract should go ahead (with conditions).
Data items to be included have
been considered by a clinical informatics expert group, which included representatives from the British Medical Association
and
the Royal College of General
Practitioners.
24Slide25
What data will be extracted?
Details of events, referrals and prescriptions, including:
Patient details - NHS number, date of birth, postcode, gender, ethnicity Events
data - date
of event, READ code, rubric, value associated to READ code, clinician, and information such as vaccinations, diagnoses, biological values such as blood pressure, BMI and cholesterol, and all NHS prescriptions
Referrals
data
-
(reason for referral, date of referral,
clinician/referrer)
Free
text will not be included, only coded
itemsSlide26
When will primary care data be collected?
If
An event
in the primary care extract specification criteria is recorded against a patient record.
And
/ Or any referral is recorded
And / Or any prescription is
recorded
And
The date of the
event,
referral or prescription is within the last
4
months
from the date that the extract is run; and
There is no objection to patient identifiable data leaving the GP practice recorded against the electronic patient record; and
The registration status set against the patient record has a value of “Currently registered
”.Slide27
How can the primary care extract be used?
The primary care data:
C
an only be linked to HES data and no other data sets at this time.
Is to
be collected and used
for commissioning purposes. Subject to EMT approval, it will also be used for research and health intelligence purposes as recommended by GPES IAG.
C
an
only be
accessed in
anonymised or
pseudonymised
form e.g. linking the data to a customer’s own data would not be permissible.
Further information about the extract is available online
at
www.hscic.gov.uk/patientconf
27Slide28
Where can I find out more?
Online
www.nhs.uk/caredatawww.hscic.gov.uk/patientconf
www.england.nhs.uk/caredata Slide29
HSCIC Data Pseudonymisation Review
A review into HSCIC’s use of data pseudonymisation was commissioned by Max Jones (HSCIC Director of Information & Analytics) in November 2013. The Review’s aim is to recommend the best way to apply pseudonymisation to data that is received, processed and disseminated by the HSCIC whilst protecting patient data.
First phase of the review involving interviews, workshops and correspondence with a range of subject matter experts, concluded in April 2014 when an Interim Report was produced.The Interim Report established a Steering Group tasked with considering
&
addressing the issues identified in the report, in particular the 3 potential models for pseudonymisation of data collected by HSCIC:
Pseudonymisation at Source
Pseudonymisation at Central
A hybrid model depending on sources of different datasets.
Steering
Group members
chosen
to bring expertise and a range of perspectives to enable the group to provide recommendations on pseudonymisation to HSCIC EMT
.
29Slide30
HSCIC Data Pseudonymisation Review
Reporting to the steering group are 3 sub-groups tasked with providing the evidence base to enable the review to consider recommendations to be put forward to the HSCIC EMT :
Data Linkage & Data Quality – To determine impact of pseudonymisation on linkages and resultant data quality.
Pseudonymisation at Source – To consider the technical, information governance and operational issues of implementing Pseudonymisation at Source to data received by the HSCIC
Standards & Terminology – To provide information on existing and emerging standards and terminologies that the review can reference as it reports to the HSCIC EMT.
Approved Terms of Reference and meeting minutes, for the steering group, are available at
www.hscic.gov.uk/pseudoreview
The Review is expected to produce by
Qtr
1 2015 a Next Stage report outlining the evidence base for approved recommendations on the use of pseudonymisation by the HSCIC on its data it receives.
30Slide31
Questions?
31