1. HSCIC data and care.data
Presented by Chris Roebuck, Director of Benefits and Utilisation

2. Who we are Established by the Health and Social Care Act 2012
An Executive Non Departmental Public Body for Department of Health
Bringing together functions from:
The NHS Information Centre
Connecting for Health
Local Service Provider functions
NHS Choices
Providing a range of technology and information services
We employ over 2,100 staff, based across 19 locations in England
Act gave us responsibility for collecting England’s Health and Care data

3. What is care.data?
The NHS has some of the best information systems in the world. Since the 1980s, we have been collecting information about every hospital admission, nationwide. This information is brought together at the Health and Social Care Information Centre. 
The information has been invaluable for monitoring the quality of hospital care, for planning NHS services, and for conducting research into new treatments. 
Whilst we have this type of information for some care provided outside hospitals, there are significant gaps meaning that it is not possible to see a complete picture of the care that individuals receive.
For example, if you visit your GP and are referred to hospital where you have an operation, attend outpatient appointments and are then treated by community services, we are currently unable to see this patient journey and compare referral times etc between different areas so improvements can be made.

4. 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.
The care.data programme aims to ensure that there is more joined up and more rounded information available to citizens, patients, clinicians, researchers and the people that plan health and care services to improve the quality, safety and effectiveness of local care services.
NHS England has commissioned the HSCIC to build on existing data services and expand them to provide linked data that will eventually cover all care settings.  
Our aim is to complete the picture, ensuring that the best possible information is available to improve the quality of care for all.

5. What is the current view?
This slide demonstrates what we already collect from hospitals – worth detailing opportunities and limitations here
Hospital Episode Statistics or HES contains 3 datasets - A&E, Outpatients and Inpatients and we can see certain events taking place for a patient in those datasets.
Mention other datasets that have been linked – more on this later (including MHMDS)

6. 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 surgery
The care.data programme aims to ensure that there is more joined up and more rounded information available to citizens, patients, clinicians, researchers and the people that plan health and care services to improve the quality, safety and effectiveness of local care services.
NHS England has commissioned the HSCIC to build on existing data services and expand them to provide linked data that will eventually cover all care settings.  
Our aim is to complete the picture, ensuring that the best possible information is available to improve the quality of care for all.

7. Example: A&E Who goes to A&E?
Highest percentage of A&E attendances are for very young children and those in their early twenties.
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.

8. 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%.
Percentage of HES A&E attendances by deprivation (IMD) deciles of residence
Most deprived 10%
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.

9. What happens while they are there?
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.
Number of attendances by time in A&E (hours:minutes), by 10 minute time intervals, and outcome, 2012/13.
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.

10. 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 and , 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 cent
The care.data programme aims to ensure that there is more joined up and more rounded information available to citizens, patients, clinicians, researchers and the people that plan health and care services to improve the quality, safety and effectiveness of local care services.
NHS England has commissioned the HSCIC to build on existing data services and expand them to provide linked data that will eventually cover all care settings.  
Our aim is to complete the picture, ensuring that the best possible information is available to improve the quality of care for all.

11. What is the future view?
This slide demonstrates what we are aiming to achieve.
As you can see, data is collected from more sources so it can be linked together and we see more of the patient journey. And there is much greater detail available within these collections.

12. 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.
Slide shows some of the intended benefits
Some examples of how care.data will help us…
The data could be used to help NHS services deliver early diagnosis of diseases such as types of cancer, improving how patients respond to treatment
We’ve seen how linked GP data has improved diagnosis and prescribing in London for example with early diagnosis of Chronic obstructive pulmonary disease
We’ve also seen how Vioxx, an effective anti-arthritis drug, increased the risk of heart attack. It took years to find the association but linked data will help us to make connections like these more quickly.

13. What happened earlier this year?
Jan national awareness-raising campaign.
Feb 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.
Recap of what happened with the programme earlier this year
Jan 14 – awareness raising campaign began – leaflet send to all households in England which gained a lot of attention in the media
Feb 14 - NHS England announced six month extension to better understand the views and concerns of professionals, patients, and the public.
Since then a listening exercise has been taking place so we hear feedback from stakeholders and ensure we took this into account when considering the future direction of the programme.

14. 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.
Over the past few moths the HSCIC has also:
Committed to a range of improvements around transparency and managing data access. New Data Access Request Service has been launched for example to provide a single access point for customers.
Published the review of data releases by the NHS Information Centre – one of the HSCIC predecessor organisations – which was led by Sir Nick Partridge, one of our non exec directors.
Started to publish a register of the data it releases on a quarterly basis. Register is available on the website and it outlines who data was released to, what kind of data it was, and the purpose for the release.

15. Who was involved in the listening exercise?
3000 people at more than 150 local and regional meetings
GP's and practice managers
Professional bodies: RCN, BMA, RCGP
Research community
Critical parties:
Big Brother Watch and Med Confidential
Patient groups and individuals
More than 3000 people have taken part in the listening exercise at more than 150 local and regional meetings
Includes patients, GPs, practice managers, patient groups, councillors, the research community etc
We have also met regularly with professional bodies and critical parties such as Big Brother Watch and MedConfidential

16. 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.
These are the key things we have heard during the listening exercise.

17. 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.
In the meantime, the Government has put a package of measures in place to help build public confidence in the programme.
The Care Act 2014:

18. 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.
We have used the last few months to:
Restructure the programme and address some resource issues
Reconstituted the programme board
Established the care.data advisory group – this is chaired by Ciaran Devine, CEO of Macmillan Cancer Support and includes members from British Medical Association, Royal College of General Practitioners, HealthWatch, and the Information Commissioners Office.
Having heard the feedback from stakeholders about the programme, we have also agreed to a phased introduction where we will work with a small number of CCGs and carry out an evaluation before we progress to any national roll out.
We have also confirmed that access to the data that will be extracted from GP practices in this first phase will only be grated via a secure data facility – a secure room based at the HSCIC offices in Leeds

19. What has happened since ?
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.
One of the other things we have done in recent months is to conduct research with the public and professionals

20. 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.
As stated earlier, we have agreed to a phased introduction to care.data and this called the Pathfinder stage
There will be an announcement about the Pathfinder sites in the coming week and details will be made available on Connect.

21. What are the pathfinder practices?
Will test different ways of communication with patients in their areas
Will 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.
As stated earlier, we have agreed to a phased introduction to care.data and this called the Pathfinder stage
There will be an announcement about the Pathfinder sites in the coming week and details will be made available on Connect.

22. What are the pathfinder objectives?
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.
A key element to the pathfinder stage is working with CCGs, their GP practices and local stakeholders to develop the communications materials we use and ensure that patients are aware of the programme and their options.

23. How will decisions be made?
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.

24. 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.
Focus of our work has been on extracting data from GP practices – the primary case extract – and linking this to HES

25. 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 items

26. 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”.
Important to note that each extract will collect the previous rolling 4 months worth of data – we will not be collecting information from the whole patient record.

27. How can the primary care extract be used?
The primary care data:
Can 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.
Can 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

28. Where can I find out more?
Online

29. 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.

30. 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
The Review is expected to produce by Qtr a Next Stage report outlining the evidence base for approved recommendations on the use of pseudonymisation by the HSCIC on its data it receives.

31. Questions?