YOUR HEALTH: YOUR RECORDS, YOUR CHOICE

1. YOUR HEALTH: YOUR RECORDS, YOUR CHOICE 24th April 2013

2. Health and Social Care Act 2012

3. Previous NHS structure

4. The ‘new’ NHS

5. SoS HSCICHealth & Social Care Information Centre NHSCB Commissioning Board (‘NHS England’) £ DHDepartment of Health LAT NHSCB Local Area Teams CSUCommissioning Support Units DMICData Management Integration Centres CCGClinical Commissioning Groups YOUR GP YOU

6. Patient Identifiable Data(Person Confidential Data)

7. 446 459 8455

8. Personal Demographics Service (PDS) • NHS number – unique identifier • Full name(s)– including any previous names, aliases and preferred name • Date of birth, Place of birth – i.e. what you need to apply for a duplicate birth certificate • Gender– administrative gender • Address(es)– includes main, temporary and correspondence addresses • Contact details – includes (ex-directory) telephone numbers and e-mail addresses • ‘Consent to share’ status – indicates that the patient has agreed to share their health record [did you consent to this?] • Sensitive record indicator – not the record itself, but… • + another 20 fields

9. 812,881(February 2013)

10. Read Codes • A comprehensive list of terms healthcare professionals use to describe the care and treatment of their patients • Read Codes cover topics such as occupations, signs and symptoms, investigations, diagnoses, treatments and therapies, drugs and appliances and more… • Each term is attached to a unique Read Code, e.g.E2003 Anxiety with depression68N31 MMR vaccination offered151M. Day of menstrual cycle9lH.. Copy of clinical record sent to DWP1B6D. Funny turn • Each Read code may be associated with free text written by the clinician

11. SoS HSCICHealth & Social Care Information Centre NHSCB Commissioning Board (‘NHS England’) £ DHDepartment of Health LAT NHSCB Local Area Teams CSUCommissioning Support Units DMICData Management Integration Centres CCGClinical Commissioning Groups YOUR GP YOU

12. General Practice Extraction Service (GPES) DAAG Data Access Advisory Group HSCIC ‘Customer’ GPES IAG Independent Advisory Group GPES-Q GPES-Q Aggregate, de-identified or identifiable data Data request GPES-E Your GP

13. care.data request • Over one hundred datasets relating to diagnoses, treatments and interventions… • Converted into a request for ?thousands of Read Codes… • Extracting millions of Read Coded items from every GP practice in England, each associated with: • NHS Number • Date of Birth • Gender • Postcode • Ethnicity

14. GPES under HSCA 2012 HSCIC GPES IAG Independent Advisory Group NHSCB ‘NHS England’ s254 directs GPES-Q GPES-Q s259 requires care.data Patient identifiable data GPES-E Your GP

15. So, what’s the problem? • “For this first release, outputs will not be identifiable…” • Re-identification of ‘anonymised’ data • care.data is just one dataflow; identifiable data flows to HSCIC in many ways • Section 251 application in progress, to pass around identifiable data • Price lists; identifiable data for sale!

18. 0(24th April 2013)