HL Deb 25 October 2000 vol 618 cc459-67

(" . In section 7(10) of the Data Protection Act 1998 (right of access to personal data) at the end of the definition of "the prescribed period" after "be prescribed" there is inserted "and in the case of a request under section 7 which relates only to data recorded in a health record, in the forty days immediately preceding the date of the request "the prescribed period" means 21 days;".").

The noble Baroness said: In moving Amendment No. 335, I should like to speak also to Amendments Nos. 336 and 337. I wish to convey to the Committee the apologies of the noble Earl, Lord Howe, who has supported this group of amendments. He had to be in Buckinghamshire tonight. I should like also to convey the apologies of the noble Baroness, Lady Wilkins. Unfortunately, she is ill. I hope very much that she will return to the rigours of your Lordships' House by the time we debate the Bill on Report. She has a great deal to offer on these amendments.

These three amendments deal with patients' rights to see and amend their own health records under the Data Protection Act 1998. One of the amendments applies also to social work, schools and housing records. They reinstate some aspects of these rights that existed under previous legislation but which were removed when the 1998 Act came into force in March of this year. Patients have had the right to see their manual health records since 1991 under the Access to Health Records Act 1990. Computerised health records have been available since before that time under the old Data Protection Act 1984. Both measures have been replaced by the new Data Protection Act.

For the most part, the change has been helpful. There is now a single right of access by individuals to their own files, not only in the field of health, but across the board. Anyone who feels that they have wrongly been denied access can now complain to the Data Protection Commissioner and thus benefit from this more accessible complaint mechanism. However, some elements of the previous rights of access have been lost. These amendments seek to reinstate them.

Amendment No. 335 would restore the 21-day period for giving access to health records when the request is limited to information recorded during the previous 40 days. Amendment No. 336 would restore the previous right of individuals to add a statement of their views about any disputed matter to their health records and certain other records. Amendment No. 337 would limit the charges that can be made for supplying patients with photocopies of their health records.

Amendment No. 335 deals with the period of time allowed for access to health records to be given. Under the old Access to Health Records Act, the record holder had up to 40 days from the request in which to allow access. However, where a patient's request was not for the whole record, but only for information recorded in the past 40 days, access had to be given within 21 days. This shorter period was dropped when the new Act came into force in March this year, setting a uniform 40-day period for all requests. Amendment No. 335 would reinstate the 21-day period for recently recorded information.

A shorter period for this information could be easily achieved. Information recorded over the past 40 days is likely to relate to a current patient who has been seen recently. It is likely to be reasonably brief, perhaps no more than a single letter or entry on a file. Locating it and permitting access should be achieved relatively easily within a 21-day period. Other requests may take longer, of course, in particular if the patient has not been seen for many years. The file will be in deep storage and the record itself may be large.

The 21-day arrangement has advantages for the record holder. If patients can secure quicker access by limiting their request to recently recorded information, they will have an incentive not to ask for the entire record if they do not really need it. This seems less work for the doctor or hospital.

Finally, of course, the patient may be suffering from an undiagnosed problem and be anxious to see recent reports or test results, or perhaps feel that they have not been kept as fully informed as they would like. It may be extremely important for them to have the quickest possible access to the recent data in order to minimise the uncertainty and anxiety. This amendment merely seeks to restore the 21-day period in precisely the terms that applied until March this year.

The amendment seeks to insert a new clause into Part VII of the Bill, which contains amendments to the Data Protection Act 1998. Section 7(1) of the DPA establishes the individual's right of access. Section 7(8) provides that access must be given before the end of the prescribed period. This period is defined in Section 7(10) of that Act, which states: In this section…"the prescribed period" means forty days or such other period as may be prescribed". The amendment seeks to add the words, and in the case of a request under section 7 which relates only to data recorded in a health record, in the forty days immediately preceding the date of the request "the prescribed period" means 21 days".

Amendment No. 336 restores the right of individuals to add a statement of their own views about a disputed entry on a manually held health, school, social work and housing record. This reinstates a right that has been removed by the Data Protection Act 1998. The Access to Health Records Act gives patients the right to ask the holder of their health records to correct any inaccurate information on it. If the record holder was not satisfied that the information was inaccurate, he was required to, make in the part of the record in which the information is contained a note of the matters in respect of which the information is considered by the applicant to be inaccurate".

A copy of any correction or note then had to be supplied to the patient.

The Act defined "inaccurate" as "incorrect, misleading or incomplete". This wide definition went beyond factual errors and allowed patients to have a note of their own views added alongside any disputed entry, including a difference of opinion. Similar rights applied to social work and housing records under regulations made under the Access to Personal Files Act 1987, which has also now been repealed. There were separate and rather weaker provisions for school records.

Under the Data Protection Act 1998 the individual's right to have inaccurate material corrected applies only to factual inaccuracies and not to differences of opinion. Individuals have no right as such to have their own views about a disputed matter added to the record. An obscure provision gives the record holder a degree of protection against action under the 1998 Act. If they add a note about the individual's views to record where there is an alleged factual inaccuracy in information supplied by a third party, this does not apply to inaccuracies caused by the person responsible for the record, which is where it is most needed.

For medical records, this change represents a real loss. The right to have a note added to the record was particularly valuable for patients who believed they had been damaged by unjustified comments about their behaviour or circumstances, and who feared that these would prejudice all new staff who consulted the file in future. Comments of this kind remain on file indefinitely; it is almost impossible to have them removed. Allowing the patient's views to be added alongside at least ensured that the file would reflect both sides of the story. This was particularly helpful to patients who felt they were unfairly characterised as suffering from a psychiatric problem.

This provision was helpful to medical staff too. They might not have been prepared to delete comments which they felt were justified, merely because they were difficult for the patient to accept. A statutory "right of reply" provided a form of compromise which helped to take some of the heat out of a difficult situation. There is no evidence that this caused problems to medical staff. It is much more likely to have provided a useful way of helping to defuse a difficult situation.

The amendment inserts a new paragraph into Section 12A(1) of the Data Protection Act 1998. This would allow the individual, the data subject, to require the record holder, the data controller, to include in the record a statement setting out the individual's views about any matter which he or she considered to be inaccurate or misleading in relation to any fact or any opinion.

The provision applies in relation to "exempt manual data", which is the Data Protection Act's term for manually held health, social work, housing and school records. It applies to Section 12A, which, oddly, can be found in Schedule 13 to the Act.

The amended Section 12A(1) would then read: (1) A data subject is entitled at any time by notice in writing—(a) to require the data controller to rectify, block, erase or destroy exempt manual data which are inaccurate or incomplete, or (aa) in respect of exempt manual data which the data subject considers to be inaccurate or misleading in relation to any matter of fact or any opinion, to require the data controller to include with that data a statement setting out the data subject's views in relation to that data, or (b) to require the data controller to cease holding exempt manual data in a way incompatible with the legitimate purposes pursued by the data controller".

Amendment No. 337 limits the fees that can be charged to people seeking copies of their own health records under the Data Protection Act 1998. Requests for most kinds of personal records under the DPA are subject to a maximum fee of £10, regardless of the volume of information supplied. However, there are special arrangements for manual health records. These are described as transitional and will only apply until October 2001. It is not known what charging regime will replace them.

For anyone who only wants to inspect his or her manually held health record, a fee of £10 can be charged, unless something has been added to the record in the previous 40 days. In that case there is no charge for inspecting the record. This reflects the position as it was under the Access to Health Record Act.

However, where copies of manually held health records are supplied, there is a maximum fee of £50. Previously there was a standard £10 application fee plus the cost of making any copies supplied. A maximum fee sounds like a positive development. Unfortunately, no minimum fee is specified. There is no sliding scale to reflect the number of copies supplied and no requirement that fees be reasonable. The maximum fee can therefore also be the minimum fee or the standard fee. There is nothing to stop the holder of a health record charging £50 for supplying just a single photocopy.

There are signs that some hospitals may be doing that. A brief telephone survey of National Health Service hospitals revealed that at least one National Health Service trust had set a flat fee of £50 for all requests for photocopies regardless of how few photocopies are involved. That is the Preston Acute Hospitals Trust. The Homerton Hospital NHS Trust in London has a minimum fee of £25 for supplying photocopies. If more than 100 copies are supplied, a £50 fee is charged. Others make a £10 administrative charge plus the charge for photocopying. That ranges from 10p per sheet to 40p per sheet, but subject to the £50 overall cap.

The DPA sets out a more generous charging scheme for school records. A statutory maximum of £1 can be charged for the first 20 sheets with further copies charged at £1 for each 10 sheets. An overall maximum of £50 applies regardless of how many copies are supplied. The amendment proposes that charges for photocopies of health records should broadly follow this approach. There would be a maximum photocopying charge of 10p per sheet. For material other than photocopies—for example, copies of X-rays—a reasonable fee could be charged. The overall total fee that could be charged could not exceed £50.

The amendment takes the form of an amendment to the Data Protection (Subject Access) (Fees and Miscellaneous Provisions) Regulations 2000. The normal method of amending regulations is by introducing new regulations, not by primary legislation. Therefore, there may be technical objections to the amendment. However, I hope that the Government will understand the public's concern over these matters and will be helpful.

This is a highly sensitive matter. The terrible Shipman case and the tragedies of the children in Bristol bring this subject to the front line. With the likely disappearance of community health councils, people may feel that without an independent body working on their behalf patients will be even more vulnerable. One should ask this question. If patients do not have easy access to their records, whose life is it anyway? I beg to move.

Lord Cope of Berkeley

My noble friend Lord Howe spoke to me about these amendments. I should like to support my noble friend Lady Masham, who has waited so patiently until this late hour and has spoken to the amendments clearly.

I wish to stress two points. First, as my noble friend said, the amendments seek only to reinstate rights that existed under the previous legislation but which were removed when the Data Protection Act 1998 came into force. I certainly doubt whether the changes were intentional. My understanding is that the NHS Executive has no difficulty about the aspects of the Access to Health Records Act 1990 which fell between the cracks of the new legislation. It would be odd if the Government wanted a watering down of the ability of patients to gain access to their health records as the theme of so-called patient empowerment is one that looms large in the new NHS plan.

I have another point. I do not believe that it would be adequate to deal with this matter by guidance issued to the NHS. I understand that these issues were raised with the Department of Health and the NHS Executive in correspondence with the Campaign for Freedom of Information. The suggestion was that it proposed to deal with the matters by issuing guidance. That would be helpful as far as it went, but it would not go as far as the amendments do in replacing a legally enforceable right. In particular, it would not apply to the private healthcare sector as did the old legislation. Guidance would obviously affect the NHS, but it would not affect the private sector, which would remain entirely outside the scope of the legislation. In addition, the guidance would not be enforceable in the way that these provisions were under the legislation that fell between the cracks. Therefore, I hope that the Minister will reflect on these matters, at least before Report, if he cannot accept these amendments.

Lord Clement-Jones

I support the arguments advanced by the noble Baroness, Lady Masham, and the noble Lord, Lord Cope. It appears that the NHS Executive would also support the arguments, even if it does not support the principle of putting it into primary legislation. In a letter to the Campaign for Freedom of Information, it states: It is not intended … that patients should suffer from the changes … we are keen to ensure that the rights that previously existed are not lost". As the noble Lord, Lord Cope, pointed out, it is not adequate simply to have guidance. We have the opportunity to restore the rights in the Access to Health Records Act 1990 in to the Data Protection 1998, and we should take that opportunity in primary legislation, for all the reasons put forward by the noble Baroness, Lady Masham, and the noble Lord, Lord Cope.

11.45 p.m.

Lord Bassam of Brighton

I should like to pay tribute to the noble Baroness for her careful and exceptionally detailed exposition of the three amendments. I promise that I shall not attempt to match that. However, I shall have to go through some of the detail. At the end of the day, there is not a great deal between us. We are intent on being helpful.

Amendment No. 335 would make a slight change in the arrangements for individuals to gain access to their health records under the Data Protection Act.

The Data Protection Act 1998 provides expressly that responses must be dealt with promptly. They must in any event be dealt with within 40 days. That requirement for promptness, which was not in the 1984 Act, ensures that those responsible for providing information must do so without excessive delay. The 1998 Act makes it clear that 40 days is not a benchmark; it is the upper limit of what is acceptable. The rule is, therefore, that if data controllers can provide the information before the maximum 40-day period has expired, they must do so.

We believe that this formulation achieves in a different way the aim underlying the noble Baroness's amendment. However, I can undertake to make one move in her direction. 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. In the light of that undertaking and the overall requirement for promptness, I trust that the noble Baroness will feel able to withdraw that amendment.

Amendment No. 336 would reintroduce, for a limited category of manual records and for a limited period of time a right for which legislation now superseded by the Data Protection Act 1998 formerly provided.

In bringing forward the 1998 data protection legislation, the Government decided to apply the single regime for which it provides to the records previously covered by certain sectoral access legislation. As a consequence of that, one or two of the features of the legislation, as the noble Baroness carefully explained, were not replicated. The right to add a statement of inaccuracy was one of those. Within the context of the new data protection law, we did not consider it to be so important a feature as to compel its retention. I shall explain briefly why that was so.

The special access legislation provided only limited safeguards for individuals: a right of access, and a right to have data rectified or to have a "statement of inaccuracy" added. However, the 1998 Act provides for what we believe to be more effective safeguards in respect of such records. For the first time those can now be enforced by the Data Protection Commissioner.

That is a major improvement on the previous position in that individuals are no longer alone. They have the support and help of a very powerful enforcement body. The commissioner will be able to take a view on the rights and wrongs of any disagreement about accuracy. Unlike the individuals, she has powers to force record-holders to comply with her decision. Therefore, there will not simply be a statement of inaccuracy; there will be a correction of the record. We believe that to be better than simply having the right to have a statement that one believes it to be inaccurate without the record being affected. I hope that the noble Baroness will accept that because, as I said earlier, I do not believe that there is a great deal between us on that point.

The Government understand the concerns about this matter. We do not believe that it is necessary to include the provision which the noble Baroness suggests within the legislation. However, we accept that there is a case for addressing it as a matter of good practice. The health department guidance for data controllers in the health sector 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. That provides double cover. Again, I hope that the noble Baroness will see that as an important change and an improvement on the position that existed prior to the 1998 Act.

I turn to Amendment No. 337. As with the previous two amendments, this amendment relates to the former sectoral legislation, the substance of which was included in the Data Protection Act 1998. Under the previous legislation, a number of different charging regimes existed for providing subject access but there was no maximum fee. In moving to the new regime, the Government decided broadly to preserve the arrangements for health records but with one important change in respect of manually held health records by introducing a £50 fee ceiling.

We believe that that represented a significant improvement for data subjects as compared to the arrangements which existed previously. The change was not uncontentious. The introduction of a £50 ceiling where previously there was no maximum has meant that subject access requests now generate costs for health bodies which provide access that are not always covered by the maximum fee that they are able to charge. In some cases, the costs far outweigh the maximum fee. Some of the health bodies concerned have made very clear to the Government their concern about having to bear those extra costs.

Because of those conflicting interests, the Government have recognised that the present arrangements will need to be reviewed in the light of experience. For that reason, we introduced them on a transitional basis. Under the regulations which set the subject access fees, the arrangements will last only until 24th October 2001. Before that period expires, we shall review them and bring forward amending regulations. Therefore, your Lordships will have the opportunity to test the measure of our commitment.

The Government would far prefer to proceed in that way rather than moving immediately to the arrangements proposed in the noble Baroness's amendment. The review will need to take into account all the relevant considerations and assess carefully the representations that are made on both sides of the case. The Government will want to consider all possible solutions to what we accept is a difficult problem, including the type of approach outlined in Amendment No. 337.

I hope that those explanations and the three complicated but nevertheless important areas to which the noble Baroness spoke will be given fair consideration by the Committee. I hope that the amendments can be withdrawn. I am sure that, particularly with regard to the last amendment, the Government will take the noble Baroness's comments as her representations on that issue and those will be fed into the review process. I hope that the noble Baroness will feel able to withdraw her amendment.

Baroness Masham of Ilton

I thank the Minister for his helpful reply. At this late stage I can only say that we shall try to see the Minister, if he is agreeable.

Lord Bassam of Brighton

I am more than happy to do anything I can to assist.

Baroness Masham of Ilton

It is a complex matter. The public need confidence in being able to obtain easy access to their records. We live in a changing world. We have a lot of agency staff and there is now a lack of continuity in the health service.

The guidance worries me because, as has been said, it will not be applicable to the private sector, which many patients use. We need to look at the Minister's response and consider whether or not to come back on Report. In those circumstances I beg leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Clause 69 [Exemptions applicable to certain manual data held by public authorities]:

[Amendment No. 336 not moved.]

Clause 69 agreed to.

Clauses 70 to 72 agreed to.

[Amendment No. 337 not moved.]

Schedule 6 [Further Amendments of Data Protection Act 1998]:

Lord Falconer of Thoroton moved Amendment No. 338: Page 67, line 31, leave out ("10") and insert ("3(h) (honours) after "honour" there is inserted "or dignity". . In paragraph 10 of that Schedule").

On Question, amendment agreed to.

Schedule 6, as amended, agreed to.

Clause 73 [Power to make provision relating to environmental information]:

[Amendment No. 339 not moved.]

Clause 73 agreed to.

Clause 74 [Power to amend or repeal enactments prohibiting disclosure of information]:

Lord Falconer of Thoroton moved Amendment No. 340: Page 38, line 28, leave out ("or 13").

On Question, amendment agreed to.

Clause 74, as amended, agreed to.

Lord Falconer of Thoroton moved Amendment No. 341: After Clause 74, insert the following new clause—