20 February 2008
With MPs due to debate Electronic Patient Records tomorrow [1], the privacy
campaign NO2ID [2] says that they should be discussing how the relationship
between doctor and patient is being subverted for management convenience and
empire-building.
The NHS database is not just used for patient care. The so-called Secondary
Uses Service (SUS) does not provide a service to patients. It is a vast
hidden system that distributes the most personal (and people think private)
information to a horde of bureaucrats and other third parties.
"Pseudonymised" patient information – and in some instances, identifiable
patient information [3] – is trafficked for purposes including "clinical
audit, performance improvement, research, clinical governance, planning,
commissioning, public health and benchmarking" [4].
Via SUS, a wide range of non-clinical agencies, organisations and even
private companies [5] have massively greater access to information on
everyone than clinicians. Protection of confidentiality is utterly
inadequate and it is unclear how, or even if, individuals can refuse consent
for their most private details to be shared among thousands of bureaucrats.
Phil Booth, NO2ID’s national coordinator, said:
"That medics have access to a summary on "the spine" is just an excuse. It
is only rarely going to be useful. Meanwhile dozens of bureaucracies and
even private companies will get to exploit your whole medical history
without your consent.
"The Secondary Uses Service turns doctor's work and patients' lives into
fodder for the bureaucratic machine, and professional standards and human
dignity are irrelevant."
-ENDS-
Notes for editors
1) On Thursday 21st February between 2.30pm and 5.30pm there will be a
Westminster Hall debate on the Sixth Report from the Health Committee
(Session 2006-07) on The Electronic Patient Record, HC 422, and the
Government response, Cm 7264.
2) NO2ID is the UK-wide non-partisan campaign against ID cards and the
database state. See http://www.no2id.net/dbstate.php for a list of 'database
state' initiatives that NO2ID is actively opposing.
3) See 'NHS Care Record data safety fears grow', Pulse, 12/11/07:
http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4115820
4) See Connecting for Health's factsheet on the Secondary Uses Service:
http://etdevents.connectingforhealth.nhs.uk/eventmanager/uploads/factsheet_sus1.doc
Quite clearly, bureaucrats in Primary Care Trusts, Strategic Health
Authorities and the Department of Health all have access to SUS data.
5) See 'Patient-identifiable data released', Pulse, 23/8/07:
http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4114197
Any private company or organisation can apply to the Patient Information
Advisory Group (PIAG) for access to SUS data as, for example, has UK Biobank
– the controversial genetic research charity that proposes to take the DNA
of 500,000 people and track their health for the rest of their lives through
the NHS Care Records System.
For more information, or for immediate or future interview, please contact
Phil Booth (National Coordinator, national.coordinator@no2id.net) on 07974 230 839,
Guy Herbert (General Secretary, general.secretary@no2id.net) on 07956 544 308,
or Michael Parker (Press Officer, press.officer@no2id.net) on 07773 376 166.
The NO2ID Campaign
Box 412
19-21 Crawford Street
London W1H 1PJ
enquiries@no2id.net
Tel: 07005 800 651
Press: click here
