Broken commitments on access to health records

Raj Kaur
Department of Health
Quarry House
Quarry Hill
Leeds  LS2 7UE

February 17, 2003

Dear Raj Kaur,

Health Records and Data Protection Review Group (HRDPRG)

Thank you for your letter of Feruary 7 explaining that you are withholding all agendas, minutes and papers of the above Group on the grounds that they are all exempt under Exemption 2 of the Code of Practice on Access to Government Information. I am writing to ask you to review this decision, in accordance with the code.

I believe that a significant part of the materials are not covered by Exemption 2 of the code at all. Any information which does fall within the exemption should in my view be disclosed under the code's public interest test.

I say this partly because a series of explicit commitments by officials and ministers on the question of access to health records have been broken, creating a substantial public interest in ensuring that these issues are now dealt with openly. These commitments are directly relevant to the work of the HRDPG, but may not be known to its members. I would therefore be grateful if you would circulate this letter and attachments to the Group.

On the code itself, the Parliamentary Ombudsman has held that Exemption 2 is not a blanket exemption which can be applied to an entire class of documents, as appears to have been done in this case. It must be applied with reference to the particular contents of each document involved. In particular, the Ombudsman has repeatedly made it clear that this exemption does not apply to purely factual information.1

I would be surprised if the papers of the HRDPG did not include factual information about the background to the issues, or on questions such as the numbers of requests made for health records, the charges imposed, the conditions under which access is allowed, the exemptions cited, the steps taken to facilitate access, the identification required from applicants and the costs to NHS bodies. Such information cannot be withheld under Exemption 2.

The exemption itself only applies where disclosure would harm the frankness and candour of internal discussion. But if members of a committee would not be inhibited by openness, and would offer comments with the same robustness, whether or not they were made public, it is less likely that this exemption would apply. The Group is primarily made up of independent experts, rather than civil servants, who I would not, on the whole, expect to be inhibited by the prospect of disclosure.

This is a point also made in the Cabinet Office Guidance on the code which states: "there is less need for confidentiality in respect of advice from expert advisory committees, especially where the members of the committees are not civil servants".2

It is particularly significant that the Group has been told that it is free to circulate some of its papers. Its terms of reference state: "Unless papers are marked as restricted policy members are free to share papers with colleagues within their organisation". 3  The membership of the HRDPG includes representatives from the medical, legal, records management and social work professions, as well as a number of important patient organisations. If papers can be made available to all these bodies, why should they be withheld from anyone else?

Exemption 2 is also subject to the code's public interest test, which states that: "In those categories [of exemption] which refer to harm or prejudice, the presumption remains that information should be disclosed unless the harm likely to arise from disclosure would outweigh the public interest in making the information available".4

There is an obvious public interest in the question of the charges made for allowing patients to see their own health records. But there is a more important issue here, relating to the breaking of government commitments.

As you know, access to manual health records was originally provided under the Access to Health Records Act 1990 (the result of a private member's bill promoted by the Campaign for Freedom of Information). The 1998 Data Protection Act repealed most of the Act and incorporated its provisions. The Government indicated that individual rights would not be weakened by this change. A 1998 Home Office consultation document expressly stated that existing fees and response periods would not be changed.5

This undertaking was broken. Under the revised arrangements:

• The £10 maximum fee under the Access to Health Records Act was replaced by a £50 maximum.
• The accelerated 21-day response period required where a request was limited to information recorded in the previous 40 days was dropped.6
• A further change was that patients lost the right to have a note setting out their disagreement with the facts or opinions in a health record added to the record itself.7

Although the DPA also improved patients' rights in certain ways, there was no acknowledgement at the time that these particular rights were being weakened.

When we realised what had happened we raised these issues in correspondence with the Department of Health in 2000. The NHS Executive told us "we are keen to ensure that the rights that previously existed are not lost" and said this would be done through NHS Guidance which "will include recording disagreements with the content of manual records, rapid response to access requests and fees being determined on a cost recovery basis only".8  These commitments were amplified in the House of Lords by the then Home Office Minister, Lord Bassam, when Baroness Masham of Ilton raised the issues in amendments to the Freedom of Information Bill.9  Lord Bassam repeated the commitments in subsequent correspondence with Baroness Masham.

Department of Health guidance was published in July 2002.10  It refers to only one of the three issues on which action was promised. (This is the question of the £50 access fee, about which we remain concerned). The other undertakings have been broken.

For example, Lord Bassam told the House of Lords: "The Government are in the process of preparing guidance on access to health records. As part of that guidance, we shall make it clear that it is good practice to comply with the subject access requests, especially those to newly compiled records, within 21 days".11  In his letter to Baroness Masham he stressed that the 21 day recommendation would apply "to all medical records, not merely newly compiled records". The DH guidance makes no reference to responding in 21 days.

Lord Bassam also told Parliament that the DH guidance "will make clear that data controllers should allow individuals to include a statement of their views on the relevant records if they disagree with the content of those records". No such advice appears in the guidance.

The NHS Executive told us that the charging arrangements would be the subject of a "major review" and "I will ensure that your views are sought in the associated consultation process".12  We now discover that the review itself, though it involves external bodies, is taking place in private, its papers are secret, the options under consideration are confidential and there is no way for us to contribute to the process.

It seems an astonishing collapse of accountability for all these commitments - made in a consultation document, in correspondence with us, in correspondence with a peer and in ministerial undertakings to Parliament - to be broken. Whether this was done deliberately or through oversight, there are serious implications for the work the HRDPG, which is now taking these issues forward. The deficiencies revealed by these events are also likely be reflected in the briefings and guidance which the Department has provided to the Group, and may not be limited to the specific points described above. I believe the public interest in disclosing the present materials must now substantially outweigh any argument to the contrary. If the issue is the need for "frankness and candour" this too would now best be served by openness.

By making public the papers of the HRDPG, the Department would be following a well-established precedent. The Lord Chancellor's Advisory Group on Implementation of the Freedom of Information Act, chaired by a minister, has analogous functions to those of the HRDPG. Its agendas, minutes and papers - including draft LCD reports submitted to the Group for comment - are publicly available from the LCD's web site, in full, in precisely the form in which they are circulated to the Group's members.13  The minutes and papers of a preceding body, the Home Secretary's Advisory Group on Openness in the Public Sector, were similarly public.14  The HRDPG is itself dealing with freedom of information issues, and the case for it to follow suit is self-evident.

Regardless of any decision about the wider publication of HRDPG papers, could I ask that they be supplied to me as soon as possible in accordance with the code.

Could you also let me know what steps will be taken to bring the current guidance on access to health records into line with ministerial undertakings.

With thanks.

Yours sincerely,

Maurice Frankel
Director

Enclosures:

1. Letter from CFOI to DH, 16/5/00

2. Letter from NHS Executive to CFOI, 19/6/00

3.Extract from Lords Hansard, 25/10/00