YOUR HEALTH YOUR RECORDS YOUR CHOICE 24 th

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

Health and Social Care Act 2012

Previous NHS structure

The ‘new’ NHS

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

Patient Identifiable Data (Person Confidential Data)

446 459 8455

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 email 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. E 2003 Anxiety with depression 68 N 31 MMR vaccination offered 151 M. Day of menstrual cycle 9 l. H. . Copy of clinical record sent to DWP 1 B 6 D. Funny turn • Each Read code may be associated with free text written by the clinician

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

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

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 HSCIC GPES IAG NHSCB ‘NHS England’ s 254 directs GPES-Q s 259 requires care. data Patient identifiable data GPES-E Your GP Independent Advisory Group

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)