To ask Her Majesty’s Government what plans they have to ensure that electronic patient records are available to healthcare professionals on a national basis, with appropriate safeguards and patient consent.
My Lords, in asking the Question standing in my name on the Order Paper, I draw the House’s attention to my entry on the register of interests.
My Lords, the Government are committed to making patient and care records digital, real-time and interoperable by 2020. Ahead of that, summary care records, which provide essential information about a patient, such as their medication, allergies and adverse reactions, are now available in many parts of the country in key areas of the NHS, such as ambulance and A&E services. Healthcare professionals can view these, with patient consent, to inform decisions about care.
I thank my noble friend for that comprehensive Answer. I am rather concerned that the National Data Guardian’s third report, which was out last year, does not fully address the issue of who those electronic patient data belong to. Do they belong to the GPs? Do they belong to NHS England? Do they belong to NHS Digital? This is particularly important because some GPs are moving towards only localised electronic patient record-sharing, which will have an adverse effect on the efficiency of the NHS. Can my noble friend the Minister assure the House and me that electronic patient data records will be kept nationally and that it is the patient’s choice over who has access to those records?
My noble friend makes an important point about the use of data. There is a balance to be struck. The first point to be made about the use of data is that patients need to be part of any decision about sharing them. In 2012, the NHS Future Forum published an independent report on this issue and used the phrase,
“No decision about me without me”,
to describe the role of patients. There is of course a need to share data among clinicians, particularly when they treat a patient themselves. There can also be wider concerns: for example, in a public health pandemic or some such incident data would need to be shared more widely. But that can be done only with patients being informed and offering their consent.
My Lords, is there not a problem here? If all the focus is at national level, that usually takes a long time and it inhibits local progress. Does the Minister agree that one of the great challenges is being able to share information between the health service and social care if integrated care, particularly for older people who are discharged from hospital, is to be delivered? Is any progress being made in getting full integration at local level, which is clearly a challenging area?
The truth is that there is patchy use of data within the health service. Practically all GPs now offer electronic patient records and something like 9 million people have registered to make appointments online. But it is not at the same level in acute trusts, mental health trusts and so on; there is still paper usage. The intention has been to have a paperless NHS by 2020. This means that with patient consent based around clinical need we would have the ability to share data around the patient pathway, whatever part of the health service they were in.
My Lords, given the continued revelations of data security breaches, along with the absence of a response to last year’s report from Dame Fiona Caldicott, how do the Government intend to avoid a repeat of the fiasco several years ago over care.data? Does the Minister agree that it is vital that patients are given confidence in the security of their data so that they do not withdraw from allowing their data to be used for vital medical research?
The noble Baroness is quite right that the National Data Guardian produced her report last summer. There has been the intention to reply to that report but purdah has had an inevitable impact, unfortunately. She made points in that report about the simplified process for opting out but was also clear that vital uses can be made of suitably anonymised data which benefit patients directly, particularly through medical and clinical research, and about making sure that patients know about that so that they can choose to have their data shared. It is encouraging that at the moment, only around 2% of all patients have opted to have their summary care records not shared. This suggests that when it is explained properly and there are suitable safeguards, people are happy to share their data.
My Lords, on the subject of records, my noble friend on the Front Bench will have studied the February House of Commons Public Accounts Committee report, NHS Treatment for Overseas Patients. The PAC is chaired by the Labour Party at present. It identified a leakage of up to £2 billion a year in the treatment of patients who are either not entitled to NHS treatment free in Britain or whose treatment should be reimbursed by the countries from which they come. The target which the Government have for this leakage is only £500 million a year, or 25%. Will the Minister undertake that in the event of the Government being successful in the election they will make a real effort to stem this leakage, which is diluting the impact of the health service on the British people?
I am obviously not going to make any commitments for any future Government but I can tell my noble friend about the work that the Government have been doing on this issue. We are making sure that there are identity checks for overseas patients in hospitals to ensure that those people who are not entitled to free care, either through reciprocal arrangements or by some other means, pay for the care that is provided for them, while making sure that at all times anybody who is in need of urgent care has that care given to them, even if they then have to pay later.
My Lords, will the Minister make it clear to the House that there are four health services in the United Kingdom, not one? What negotiations are taking place with his equivalent colleagues in the other Administrations in the United Kingdom to ensure that there is one common computer system across the whole of the United Kingdom? Electronic patient records depend upon there being one computer system not a variety of computer systems across the whole of the country.
The noble Lord is quite right that the UK Government speak only for the English health system. There is a difference between having a single ICT system—we have been down that road and billions have been wasted—and having systems that can speak to one another and a common code of usage around data security, robustness, sharing patient opt-outs and so on to make sure that there is the ongoing access to information that the noble Lord is talking about, particularly for people who live in border areas who move between the different health systems.
My Lords, while of course patient confidentiality must always be respected, in the recent Next Steps on the NHS Five Year Forward View there was a very concerning item on urgent treatment centres. I find it worrying that personalised care plans for patients in mental health crisis or at the end of life would be available in only 40% of emergency care settings, assuming that the target of the report is met. Are the Government prepared to look at these figures and consider them carefully?
The picture that the noble Baroness paints starts from a position of not a great amount of sharing, particularly outside primary healthcare. That is what the Government have been trying to address. The primary route for doing that has been through the global digital exemplars which are enabling data sharing with all the appropriate safeguards in acute trusts and mental health trusts. The intention has been to continue to increase that over time.