Advice to General Practitioners
In 2006, the BMA’s Annual Representative Meeting (ARM) demanded that patient information should not be transferred onto the national database without the explicit consent of the patient. It has become clear that the Government does not intend to allow patients a true “opt out” in respect of the national database (‘Records consent warning’ – BMA News Review, November 18th 2006). The Department of Health (DoH) intends that all records will be uploaded to Local Service Providers (LSPs) and will eventually become accessible via the national ‘spine’, notwithstanding the wishes of the patient. (The database proposal given a measure of support by the BMA’s ARM in 2005 is fundamentally different from what is now on offer.)
The need for the 2006 policy is clear from detailed Connecting for Health (CfH) “back office” documents discussed and linked from here. These documents reveal that the safeguards claimed by CfH and, regrettably, reiterated by the BMA
- have not yet been designed, let alone coded and tested;
- will not be available by the proposed initial upload of the first batches of data in early 2007;
- will never protect information collected and disseminated within enormous NHS trusts;
- will never attain the claimed standards of privacy, particularly in respect of information in scanned documents;
- will be frequently overridden, contrary to patients’ wishes. Even if CfH implements what it has the gall to describe as an “opt out”, this will at best obstruct access to patient records by other clinicians involved in their care; it will not prevent the central collection of personal health data or hinder its many other proposed uses.
Unless you act now, before GP records are uploaded, then all of your medical records (as both patient and as clinician) will be accessible in ways that are outside your control.
As a patient, you can ask that your own GP labels your own records with the Read codes “93C3 – Refused consent for upload to national shared electronic record” and “93C1 – Refused consent to upload to local electronic record”. As a doctor, you may find that your dissenting patients strengthen your hand (and the profession’s) when it comes to maintaining control of your systems – which is important for retaining professional autonomy.
The Department of Health has claimed that it is the data controller for GP records. This is simply wrong in law. If you are a self-employed GP, you are the data controller; you are also responsible for any breaches of common law, the Data Protection Act and Human Rights Act which occur when you transfer the data to the spine or to an LSP contrary to the expressed wishes of the patient. The DoH cannot relieve you of your responsibilities. You must decide if you are willing to rely on its advice. The argument that “I was only following orders” has been well tested in respect of medical ethics and has been found inadequate as a defence. The DoH cannot take the data; it can only ask you to provide it.
But more than that, even National Programme for IT (NPfIT) research suggests a substantial minority of the population will not find the safeguards sufficient – even assuming they can be made to work. An independent poll showed that most people in Britain don’t approve of a mandatory central health records database with no right to opt out. Are the merits of the database sufficient to justify a breach of trust?
Your professional bodies, the BMA and the RCGP, have recommended that explicit patient consent is obtained before information is transferred on to the ‘spine’. Connecting for Health’s own risk analysis confirms that the current security proposals jeopardize healthcare, and that local storage of sensitive data is to be preferred to ‘sealed envelopes’ (even if they work). Ministers have previously informed the public and Parliament that patients will be able to opt out fully from the national database.
Finally, to facilitate the canvassing of your own patients’ instructions, you may wish to provide links from your practice website to www.TheBigOptOut.org and print out hard copies of TheBigOptOut’s opt-out leaflet to leave in your reception area, which you can download from here – MS Word format [188KB file] or Adobe PDF format [71KB file]. You may also wish to provide a link for patients to the CfH website. This is about patients being able to exercise a genuine informed choice. It is a choice you might like to make, as a patient, on your own behalf.