Government ‘concession’ on NHS database worse than useless

18 December 2006

Government plans to allow patients a chance to avoid their medical history being uploaded to a centralised NHS ‘Spine’ database—but only if they can prove that doing so would cause them substantial mental distress [1]—were condemned today by privacy campaigners NO2ID [2]. The Government has decided to go forward with the scheme, which will mean personal records being accessible to in excess of 400,000 clinicians and officials [3], despite the fact that the privacy systems originally planned are not working [4]. It has also withdrawn its implied promise to allow people a choice [5].

Guy Herbert, NO2ID’s General Secretary said:

“It is not just monstrous. It is madness. You are expected to petition an official to be allowed to keep intimate details of your life private—permission which he may, in his wisdom, decide to grant. But only after having examined whatever it is that you don’t want others to know and agreed that you are sufficiently distressed for you to be permitted exemption. Mediaeval trial by ordeal was fairer.”

Government plans also disregard that information, once supplied to the system, will be held forever [6].

Phil Booth, NO2ID’s National Coordinator said:

“How is a child of 6 to explain to an official the ‘mental distress’ she will suffer when her medical records are ‘shared’ inappropriately at the age of 32? This is not about healthcare or patient choice; it is about bureaucracy and control.”

Confidentiality campaigners insist that doctor-patient confidentiality is not at the discretion of the Department of Health and are continuing to urge patients to write to their own doctors [7] to demand their records are not passed to the Spine.

-ENDS-

Notes for editors:

1. Electronic Care Records go ahead – BBC

http://news.bbc.co.uk/1/hi/health/6184043.stm

2. NO2ID is cross-party, non-partisan national campaign against ID cards and the database state. See http://www.no2id.net

3. The Department of Health’s own figures showed 298,973 NHS staff registered to use the system at 1st December 2006, with many more to join them.

See: http://www.connectingforhealth.nhs.uk/faq/delivery

4. There was to have been a system of “sealed envelopes” for information defined as confidential by patients or clinicians – the relevant DoH documents describing its objects as: “1. Building confidence, 2. Offering choice and giving control, 3. Dissuade patients from dissenting, 4.Enable sharing of PSIS [Personal Spine Information Service] messages” (Our emphasis.) See: www.connectingforhealth.nhs.uk/crdb/sealed_envelopes.ppt [MS Powerpoint]

But they aren’t working yet. See:

http://technology.guardian.co.uk/online/story/0,,1491908,00.html (An article of May, which is still valid, since they still aren’t working.) How information, once shared on the main Spine, might be sealed again is an unanswered technical question.

5. John Hutton MP, then the relevant minister, in Hansard, 2 Nov 2004 : Column 176W

“Patients will have the right to specify that detailed information recorded at the point of contact with the NHS should not be available to other NHS organisations via the summary record held on their NHS care record. They will also have the right to define some information as especially sensitive and only accessible under terms of explicit consent.”

See: http://www.publications.parliament.uk/pa/cm200304/cmhansrd/vo041102/text/41102w08.htm

6. “…building up a comprehensive patient history,” a phrase which recurs in many documents relating to the NHS Programme for IT, notably the Scottish Executive’s most comprehensive “Building a Health Service Fit for the Future” See:
https://www.scotland.gov.uk/Publications/2005/05/23141500/15035

(Which also discusses the merger of health and social care records to form a yet bigger and yet more intrusive system.)

7. See: http://www.nhsconfidentiality.org/?page_id=9

For further 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.

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