This May 2000 letter to the Department of Health explains the Campaign’s concerns about the loss of patients’ rights as a result of the repeal of most of the Access to Health Records Act 1990 and the incorporation of its provisions into the Data Protection Act 1998.
Department of Health
48 Carey Street
London WC2A 2LS
May 16, 2000
Dear Ms Warncke,
Access to manual health records
Following our conversation last week, I am writing to explain our concerns about the apparent loss of patients’ rights as a result of the repeal of most of the Access to Health Records Act 1990 [AHRA] and the incorporation of its provisions into the Data Protection Act 1998 [DPA].
We have three concerns: the loss of the patient’s right to have a note of their views about a disputed matter added to the record; the substantial increase in fees that can be charged for giving access and the longer period allowed for responding to requests. We may propose amendments to the Freedom of Information Bill, during its Lords committee stage, to address these concerns.
Recording disputed views
Under section 6 of the AHRA, a patient could ask a health professional to correct inaccurate information found on his or her health record. If the health professional was not satisfied that the information was inaccurate, the patient was nevertheless entitled to have a note added to the record setting out his or her views about the disputed information. This right was not limited to challenging factual errors, but applied to any information.
The DPA appears to have severely curtailed this right. The patient can now only have his views about a disputed entry recorded where it relates to a factual inaccuracy, or an opinion based on a factual inaccuracy [DPA s 12A and 70(2)]. The patient has lost the right to have his or her views recorded about a disputed opinion, comment or diagnosis.
We promoted the private member’s bill which became the Access to Health Records Act and still receive a steady stream of requests for advice in relation to it. The right that has now been removed was important and appreciated, particularly by patients who believed they had been unfairly characterised as suffering from psychiatric illness or that an unjust comment about their character or behaviour had been made. Even if they could not require the health professional to delete an entry, they at least had the reassurance of knowing that their side of the story would be represented on the record. As far as I know, this was never regarded as a problem by health professionals either, who saw it as a means of defusing potential conflict. The fact that the health professional had to give the patient a copy of the annotation, free of charge, helped to reassure them that their concerns had been listened to. It is extremely surprising to find that this valuable provision has been dropped.
Even where the patient complaints of a factual error, the right to annotate the record apparently only applies if the inaccurate information was supplied by the patient or a third party – but not if the health professional made the alleged mistake [DPA ss 12A(4) and paragraph 7 of Part II of Schedule 1]. The medical literature is full of studies documenting the factual inadequacies of medical records. Observations about one patient may have been entered on someone else’s files or test results or diagnoses may have been wrongly recorded. It will not always be possible to conclusively determine whether a patient’s complaint of such an error is well-founded. But a right to have an annotation indicating that the patient questions the data should be uncontentious, and helpful to good medical practice.
Charging for subject access
The Access to Health Records Act allowed a £10 application fee to be charged, plus photocopying and postage costs. This has now been replaced by a maximum £50 fee, which includes the costs of any copies supplied [Data Protection (Subject Access) Fees and Miscellaneous Provisions) Regulations 2000.] These fees apparently apply only until October 2001. We assume that at this point new fee regulations are expected be made, which may reapply or even increase the current £50 fee.
Although the £50 fee is described as a ‘maximum fee’, there is nothing in the legislation to prevent it being used as a standard fee for all requests in which copies are supplied – even if only a single sheet of paper is involved. The regulations do not require that the actual fee in any particular case should be ‘reasonable’ or reflect the number of copies supplied or the amount of work needed to comply with the request. The same regulations set out a sliding scale for access to educational records, at which the costs reflect the number of photocopies supplied. No such approach applies to health records.
It appears that a health authority or health professional would be entitled to charge £50 for any request in which copies were provided, regardless of how few they were. The Department of Health’s guidance on the regulations merely mentions the £50 maximum, but makes no suggestion that any lower figure should normally be applied [www.doh.gov.uk/dpa98/]. I have not been able to identify any legal grounds on which the Data Protection Commissioner could challenge a charge of £50 for a single photocopy.
I recognise that a patient who merely wants to inspect the record, not take photocopies, would be entitled to do so free of charge under the new Act, as under the AHRA. However, it will often not be practical for patients exercise their right by inspecting the record, either because the record is too complex to be absorbed without taking copies away, or because the individual is too ill to visit the hospital where they are kept or lives too far away.
The £50 fee also appears to directly contradict the undertaking given in the Home Office consultation document of August 1998 which stated that although the Access to Health Records Act would be repealed, ‘the Government intend to…maintain their present fees and response periods‘ (paragraph 12).
A third change, which also appears out of keeping with this commitment, is the failure to repeat the provisions of section 3(5) of the AHRA which required a patient to be given access to a health record within 21 days, where the request was limited to information recorded in the past 40 days. The intention was that someone who merely wanted to check what had been added to their notes in the immediate past, should not have to wait the full 40 day period that otherwise applied to requests. This shorter period has now been lost, and replaced by the DPAÕs standard 40 day period.
Given the complexity of the DPA, I realise that it may answer some of these concerns in ways that I have not recognised – if so, I would appreciate being pointed in the right direction.
I am copying this to Graham Sutton and Lee Hughes in the Home Office; to the Data Protection Commissioner’s office, the BMA and a number of others.