YOUR HEALTH: YOUR
RECORDS, YOUR CHOICE
24th April 2013
Health and Social Care Act
2012
Previous NHS structure
The ‘new’ NHS
SoS
DH
NHSCB
Department
of Health
Commissioning
Board
(‘NHS England’)
LAT
NHSCB
Local Area
Teams
HSCIC
£
Health &
Social Care
Information
Centre
CSU
DMIC
Commissioning
Support Units
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.
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
SoS
DH
NHSCB
Department
of Health
Commissioning
Board
(‘NHS England’)
LAT
NHSCB
Local Area
Teams
HSCIC
£
Health &
Social Care
Information
Centre
CSU
DMIC
Commissioning
Support Units
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
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’
s254
directs
Independent
Advisory Group
GPES-Q
GPES-Q
s259
requires
care.data
Patient
identifiable
data
GPES-E
Your GP
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
(24th April 2013)