you Robin Burgess Regional Head of Intelligence - - PowerPoint PPT Presentation

care.data: listening to you

Robin Burgess Regional Head of Intelligence robin.burgess@nhs.net

Care.data is

• …branded as ‘Better information means

better care’

• A secondary or indirect care database – not a

real time database to share data for immediate/direct care uses in surgery or at

• bedside. NOT the same as the Summary Care

Record

• Intends to be a set of linked data from all NHS

and social care settings to enable better commissioning, research, public health, clinical audit and performance and system management

NHS | Presentation to [XXXX Company] | [Type Date] 2

The benefits of the programme

• Research into the effectiveness of treatment and

how effective services are, through:

• A much more detailed data set which is capable of

answering multiple queries and information needs

• Improving the quality of services and outcomes

through determining better treatment

• Identification of links between prescribing etc and

effects – could prevent a future thalidomide

NHS | Presentation to [XXXX Company] | [Type Date] 3

The current position

• It is acknowledged that NHS England failed to

communicate the programme adequately to the public and they are confused, and sometimes angry

• Some parts of the programme need to be debated
• Extraction halted until the autumn 2014
• NHS England will spend this time gaining views from

and communicating more clearly about the programme, with patients, the public and the NHS

NHS | Presentation to [XXXX Company] | [Type Date] 4

Describing: to describe patterns of hospital activity

• ver time

Predicting: to build predictive models that determine risk of adverse events Evaluating: Modern methods, such as propensity score matching, use HES data to create synthetic controls

Uses of HES

Comparing: to compare health needs and use of services in different areas. Auditing: to help assess the quality of hospital care. Investigating: to detect associations.

UNCLASSIFIED

NHS provider Health and Social Care Information Centre

Identifiable data Potentially identifiable data Aggregate data

NHS Commissioners & Providers, Public Health England etc. Publication Health Service Researchers & analysts Patient S251, communicable disease

• utbreak, etc.

care.data

The controversial issues: lets hear your views

• Opt-out, opt in or consent? What do you think is

right?

• What does pseudonymised actually mean, and

why can’t data be anonymised? What do you think of pseudonymised data?

• The supply or sale of patient data to non-NHS

interests and the question of profiteering by it

• The security of the data
• How we communicate now

NHS | Presentation to [XXXX Company] | [Type Date] 8

Changes already announced

• Controls on the sale of data to non-healthcare
• rganisations/for non-healthcare purposes
• Audit and release of information on previous data

releases

• An enhanced and legally constituted group to

approve any release

• Fines for re-identifying data
• A new independent advisory group
• A new publicity campaign

NHS | Presentation to [XXXX Company] | [Type Date] 9

What do you think?

• Is a better informed opt-out process adequate
• r should it be consent (opt-in)?
• Should we write to all patients by name?
• Is release of pseudonymised data to non-NHS

people acceptable?

• Can we ever assure people adequately about

security of data?

• Is six months enough to change this

programme?

NHS | Presentation to [XXXX Company] | [Type Date] 10