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Dec 03, 2022 •243 likes •359 views

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

  1. care.data: listening to you Robin Burgess Regional Head of Intelligence robin.burgess@nhs.net

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

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

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

  5. Uses of HES Describing: to describe Predicting: to build Evaluating : Modern patterns of hospital activity predictive models that methods, such as over time determine risk of adverse propensity score matching , events use HES data to create synthetic controls Comparing: to compare Auditing: to help assess Investigating: to detect health needs and use of the quality of hospital care. associations. services in different areas.

  6. UNCLASSIFIED

  7. care.data Publication NHS Health and Commissioners Social Care & Providers, NHS provider Information Public Health Centre England etc. Health Service Researchers & analysts S251, communicable Patient Identifiable data disease Potentially identifiable data outbreak, etc. Aggregate data

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

  9. Changes already announced • Controls on the sale of data to non-healthcare organisations/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 9 NHS | Presentation to [XXXX Company] | [Type Date]

  10. What do you think? • Is a better informed opt-out process adequate or 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? 10 NHS | Presentation to [XXXX Company] | [Type Date]

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