The NHS is to overhaul the way staff access electronic medical records following concerns the existing system is unethical.
Patients will now have to give permission every time NHS employees want to access their electronic Summary Care Records (SCRs), following a decision by the NHS Care Records Board earlier this week. Previously, patients had to choose between two options on how their SCRs were treated — either allowing the records to be shared with personnel only with their permission, or to be shared with any authorised NHS user.
SCRs are being trialled for patients in five areas of the UK — Bolton, Bradford Bury, Dorset and south Birmingham — and more than 160,000 have been created to date, with only one percent of patients opting out.
A study of the trial rollout by University College London (UCL) in May 2008 questioned the ethics of automatically adding patient's details to a SCR unless they opted out, and the complexity of the two-tier existing system where patients had to chose who could access their records.
Dr Gillian Braunold, clinical director of the SCR, said the changes had been prompted by the UCL report's findings.
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She said in a statement: "We have listened to doctors and nurses who have raised concerns about the complexity of the earlier model and are certain we now have a model which will work across a full range of care situations."
Patients will still have to opt out of having a SCR created from their medical records.
It follows the launch of a 12-week consulation by the NHS with the public on how it uses patient data.
Talkback
Why would you want your medical data on this ridiculous system? Well, for my part, I'm not exactly sure but it would presumably have something to do with the medics being able to see it; yes? Sure! Why else?
Under these changes, the medics would need your specific permission to access your records. Lets just hope that you are in a position to be able to say yes, and are aren't in any actual medical distress. Mind you, if you were in a position to be able to sign the consent form, you would presumably be in a position to provide the life saving alergy and such info that this "system" is supposed to be be for.
You will note the careful wording in the article about who has to get consent. So if you have access to the database and are NOT an NHS employee, you aren't required to get consent. At all.
Stunning.
Here's a more informed view pinched from the no2id web site:
Andy M
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NO2ID calls on MPs to tackle hidden "SUS" database
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.