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

Health and Social Care Act 2012

Previous NHS structure

The ‘new’ NHS

YOU YOUR GP DMIC Data Management Integration Centres CCG Clinical Commissioning Groups CSU Commissioning Support Units LAT NHSCB Local Area Teams HSCIC Health & Social Care Information Centre NHSCB Commissioning Board (‘NHS England’) DH Department of Health SoS £

Patient Identifiable Data (Person Confidential Data)

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

812,881 (February 2013)

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 depression 68N31 MMR vaccination offered 151M. Day of menstrual cycle 9lH.. Copy of clinical record sent to DWP 1B6D. Funny turn Each Read code may be associated with free text written by the clinician

YOU YOUR GP DMIC Data Management Integration Centres CCG Clinical Commissioning Groups CSU Commissioning Support Units LAT NHSCB Local Area Teams HSCIC Health & Social Care Information Centre NHSCB Commissioning Board (‘NHS England’) DH Department of Health SoS £

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

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

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

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!

0 (24 th April 2013)