Mr. Kevin Barron (Rother Valley) (Lab): I hope to make quick progress in my contribution as Chairman of the Select Committee on Health to give others, both members of the Committeethree are currently presentand other hon. Members, the opportunity to have a say on our report on the electronic patient record.
What patient information will be held on the new local and national electronic record systems,
We also considered who will have access to locally and nationally held information and under what circumstances, whether patient confidentiality can adequately be protected and how data held on the new system can and should be used for purposes other than the delivery of care. Clinical research is an obvious such purpose, and most hon. Members know that there are two reasons why we are successful at it as a nation. First, we have a national health servicewe have had it for 59 yearswhich tends to bring together clinicians in both the public and private sectors, particularly in the pharmaceutical industry and other related industries. Secondly, we have conducted a wealth of research, which has led to great improvements in patient care in our health service.
We examined progress on developing the NHS care records service and the data spine and why delivery of the new system is up to two years behind schedule. One or two hon. Members present, particularly the hon. Member for South Norfolk (Mr. Bacon), have become expert on that, and no doubt we will hear a few words from the hon. Gentleman later.
We received 70 pieces of written evidence, which were submitted by academics, lawyers and IT companies as well as by a number of staff and patient groups. The Department of Health also provided us with an initial memorandum and sent additional submissions on 12 June and 16 July. We held oral evidence sessions between April and June.
We made a number of visits to different parts of the globe. Hon. Members may have seen the interesting article in The Independent last week, which included a record of how money has been spent by Select Committees. We came fourth in that listwe were not in a medal position. We went to Nashville, Tennessee, not because we are particular fans of country music, but to talk to
the people who are implementing the system there. One of the most detailed care record systems in both the community sector and the acute sector, as we call it in the UK, is in a childrens hospital in Nashville, which is also a teaching hospital. We saw exactly how it helps the clinician and the patient in situ in what we call the secondary sector.
We also examined the US veteransnot veterinaryadministration, which has a database of some 6 million records of vets. We think that it is probably the biggest such database in the world, although it does not match the scale of ambition in the UK. It was good to talk to people who have been involved in it for many years. One thing that we learned was that, when there were the disastrous problems caused by the hurricane in New Orleans and all the local systems were shut down, the health care of the veterans who got out could continue because of that database. It worked well, and those peoples needs were not lost.
We were supported by the wealth of the Committees secretariatI pay tribute to them once againbecause our service in the House as overseers of what happens in Government and wider health care issues is well served by our permanent advisers. We also had three advisers whom I wish to thank, Professor Ross Anderson, Dr. Jem Rashbass and Professor John Williams, who advised us on the details of the inquiry.
We considered matters under four headings, which I shall run through to give a flavour of what we did. The first was an overview of electronic patient record systems. As I have said, we went out to the United States, and we also went to Canada to examine what was happening there. We also went to Amiens in France to see the hospital system and to Paris. We were able to do international comparisons of what is held, where it is held and how it is used. We also went to Homerton hospital, which is here in London, to see what happens to the detailed care records there.
The EPR is essential and is the top priority for improving health care. The installation of a comprehensive IT system is a long journey best managed by a staged and piloted development not a big bang approach.
The input of end-users is vital in planning, design and implementation.
Local flexibility is essential to allowing continued use of effective systems already in place, as is interoperability if local systems are to communicate with one another.
I have personal experience of that; years ago, my local hospital could not talk to the local general practitioners service. They both had computer systems, but when they wanted to put out a report on discharge into the community, it was fed out on paper and sent in the post. In this day and age, that should not happen, particularly if somebody being discharged from hospital has a continuing care need. The record should be passed over as efficiently as possible.
EPR systems make more personal health data accessible to more people,
breaches of security and confidentiality must be regarded as serious matters.
The support of the public must be obtained. The fact that EPR systems are essential for the delivery of modern health care and can improve communication between different health care staff and between staff and patients must be adequately publicised to users of the NHS. We believe this would help to convince people of the necessity and benefits of the EPR and reduce resistance where it exists.
The second matter that we considered was the summary care recordthe concept of having 60 million individual summary care records on one databasewhich has grabbed headlines for a number of years. It is likely that that record will be in several places rather than on one database, but they will be interoperable. The summary care record is still being piloted, and hon. Members will read in some detail what we have said about the pilot.
One thing on which we partly agreed with the Government, although not totally, was the use of what are called sealed envelopes. They are a way of protecting things that someone would say to their doctor but not to their partnerfor example, something about their health that they would not want a member of their family to know. There is a legitimate way of making such information unavailable on first instance to anybody accessing the summary care record. We stated:
Sealed envelopes are a vital mechanism if sensitive information is to be held on the SCR.
The right to break the seal protecting information in sealed envelopes should only be held by patients themselves, except where there is a legal requirement to override this measure.
David Taylor (North-West Leicestershire) (Lab/Co-op): Will my right hon. Friend, the Chairman of the Select Committee, say whether his Committee considered what the British Medical Association and others have been calling for some time, namely that there should be explicit individual consent before health care information is held centrally or accessed remotely? Is he attracted to that principle?
Mr. Barron: Personally, no, and I do not think that the Committee would have found that the system should be opt-in as opposed to opt-out. I believe in the opt-out approach. Sealed envelopes are a completely different situation, and people will decide with their clinician what should go in them. The Committee and I believe that it is important that access to the sealed envelope should be at the patients behest, and in few other circumstances. Perhaps there should be a legal requirement in that respect.
Jeremy Wright (Rugby and Kenilworth) (Con):
The right hon. Gentleman knows, and the report reflects, that the technology required for sealed envelopes is not
available yet and therefore was not available during the Bolton trial. How much does he think that weakens the effectiveness and relevance of that trial?
Mr. Barron: I do not know the detail of those pilot schemes. We have read about them, and we had a presentation on them down here, as opposed to up in Bolton. The presentation was held here mainly for time-management reasons, but I would have liked to go into the field and see it in situ. I can only say that if any information in the pilot was that sensitive, it probably would not have been added to it at all. It is true that, technically, we are not quite there yet with the sealed envelope, but it is quite feasible to lock something into an IT program that people would not be able to access unless many levers were pulled.
should not be made available to the Secondary Uses Service,
Patient consent to the use of anonymised or effectively
pseudonymised data is not required by law and the use of such data for secondary uses, including research, is both accepted and actively promoted by the relevant professional and regulatory bodies.
I accept that it is possible to take information out of my records so that I am not identified as an individual, and I do not think there is a problem with that. If we were starting with a blank piece of paper and did not have the history of the past three or four years, I might agree that that would be all right, because information can be anonymised. In those circumstances, using it for secondary purposes might not be difficult; indeed, we have been led to believe that other areas of medical research do that now.
We are not starting from a blank piece of paper, and the system has not been up and running for many years. People are being asked to commit parts of their medical records that they would not share with family members into a system. I do not disagree with that inasmuch as it can be sealed and put away, but I ask the Government to rethink allowing sealed envelopes to be used by secondary users at this stage in the development of the NHS IT programme. I am not saying that we could not do it in years to come.
Sadly, a number of health professionals in this country are actively campaigning against any of this being introduced, suggesting things that will happen with the system. On one website that I looked at this week, a practice is getting people to opt out, saying that the records will be sold to pharmaceutical and insurance companies, and that the Government will profit from them. That is palpable nonsense, but it is being propagated by medical professionals in this country. We must recognise that the issue of sealed envelopes, and details about peoples health that they might not want to share with members of their familyI am not talking personallyshould be considered differently, especially in view of current debate and the current situation in this country. Will the Minister consider that?
Mr. David Drew (Stroud) (Lab/Co-op): I congratulate my right hon. Friend on an excellent report. Another area that concerns me is the relationships between the individual, the medical fraternity and the care sector. I can think of many circumstances in which information could and should be shared with people working in the care sector. I know that the Committee principally considered the medical aspects of this issue, but will my right hon. Friend share his thoughts on what information could be held electronically and made accessible to people living in care homes or receiving care at home?
Mr. Barron: That area is very much part of the evolution of the system. Not all medical care is provided in medical institutions. We have interim positions between home and hospital, usually on the way out of hospital, with rehabilitation, for example. Hospices are also relevant. We have a brief on this through ePolitix, and Help the Hospices is involved in this issue. There are health professionals working in acute, end-of-life medical care for whom it might be vitally important to have information about patients that they cannot get by telephone. If an individuals situation changes, those professionals might seek more information about their patient history. I do not see any problem with that, if that information can be accessed by health professionals. This area must be considered further, and the Government need to consider what will happen about health care provided outside a health institution.
I want to discuss another of our recommendations about the summary care record, which concerns operational security. In paragraph 127, we said that operational security depends on effective enforcement, and that:
The Department of Health and the Information Commissioners Office have called for custodial sentences for people who unlawfully access personal information. The Committee welcomes this, and recommends that a substantial audit resource be provided to detect and prosecute those who access the system unlawfully.
Organisations and individuals using systems supplied by NHS Connecting for Health must abide by set conditions controlling access to and use of those systems. These mechanisms, which are already in place, ensure that only appropriately authorised NHS personnel, with an appropriate role and an established legitimate relationship with the patient, can access confidential patient information in the NHS.
However, we often hear in the media that that is not the case. Earlier this month, I had a meeting with Dr. Richard Vautrey, the deputy chairman of the General Practitioners Committee of the British Medical Association. I told him that I thought the BMAs press release of 1 February on this issue was scaremongering, and we had an honest and earnest debate. I said that if he had any evidence of people wrongly accessing information, I would like him to let us have it.
a patient was admitted in to a neighbouring city hospital and her full GP record was accessed on the ward by a pharmacist. She only found out when her GP told her that this had happened when she was discharged and next saw her GP.
|Next Section||Index||Home Page|