care.data 17 09-13

Building choice of high quality support for commissioners

care.dataHigh quality care for all: now and for future generations

Dee MooreIntelligence Specialist

September 2013

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care.data - Agenda• NHS Changes

• What is care.data

• Reality

• Why care.data?

• Starting point

• Growth

• Information Governance & Confidentiality

• Data Pipes

• Forward Timeline

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. I t 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.” “I f 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)

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

TextText

World class dataOpen Outcomes

Patient Voiceand Insight

Customer choiceand control

Transparency

Participation

Securing a world class health service

High qualitycare for all

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And what does this mean in real terms?

Trying to join the dots

Joining the dots further

PregnancyLetters

ScanMiscarriage

GP Stressful period

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

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.

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)

UNCLASSIFIED

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

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

Five outbound flows of data from CES

Health and care

providers

Health and Social Care Information

Centre

Statutory Disclosures

e.g. s251Patient

Health Services Researchers

Providers, Commissioners,

Public Health England etc.

Published data

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

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2

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care.data in progress

Current

Phase 3Phase 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.

Resources

Website www.nhs.uk/caredata

On-line toolkit with Patient FAQs

Look in your GP practice for patient leaflets and posters