Patient Medical Records

Barbara Keeley Excerpts

Tuesday 4th March 2014 Westminster Hall

[Mr Godsiff]

I entirely agree with my hon. Friend and indeed, I will come to that point later. As I said, we have an opportunity in the next six months to try to get the scheme right. If the Government now address the many concerns raised about privacy, consent and the creeping commercialisation of our health service, they have the opportunity to create a scheme that offers enormous benefit to health care and research. However, if they fail to do that and continue to steamroll ahead, ignoring public concern, in six months’ time they will find themselves in precisely the same place as they are now, faced by massive public opposition to a scheme that has the potential to do so much good and to save lives.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I wonder whether my hon. Friend has noticed an issue that has emerged. NHS England uploaded a vast amount of hospital patient data—188 million records—to Google servers. That was done—we have already heard mention of the firm, Atos—by PA Consulting Group, which lost a Home Office contract a few years ago because of data loss. Does he agree that it appears that NHS England has now lost control of the IT side of the project, and that before we go forward, we need full disclosure of all the uses to date of patient data?

[Mr Godsiff]

My hon. Friend makes a very good point. I hope that the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) has taken note of what she said and that the Department will be forthcoming in identifying exactly how much confidential NHS data have been released to private profit-making companies. He might also point out how much income the Government have received from that.

There are a huge number of problems with the existing scheme. I could mention the information leaflets that look more like junk mail and have no opt-out return slip on them, or the fact that data extraction was planned to start before the code of practice on who will be allowed to access the data was completed, or the lack of a clear figure on cost. However, perhaps the most damaging flaw in the whole plan has been the refusal to listen to or to address those concerns when they were raised by doctors and patients. We simply cannot and should not bring in a scheme that lacks the consent and approval of the vast majority of people whose confidential health data will be used.

--- Later in debate ---

[Dr Poulter]

My hon. Friend makes an important point. It is also important to highlight that sections 263 to 265 of the 2012 Act put much stronger safeguards in place. Those sections state that processes must be in place in the Health & Social Care Information Centre to ensure confidentiality and to ensure that data are always handled in the right way. The body is responsible for ensuring that those processes are kept up to date and that there are accountability frameworks for those processes. That important step forward was not in place for the previous body.

[Barbara Keeley]

Will the Minister give way?

[Dr Poulter]

I hope the hon. Lady will forgive me, but I want to make progress on some of the points raised in this debate. I will have to be brief any way, and she had a good chance to question me when I appeared before the Select Committee on Health last week. If she feels that she did not have an opportunity to discuss all of the issues, I am sure she will have an opportunity next week when we discuss these matters in our consideration of the Care Bill. Amendments were tabled last night to support some of the issues that we are talking about today. Those amendments will be considered next week, and I am sure those Members who cannot contribute in greater detail today because of the time will be able to contribute much more fully to next week’s debate.

Finally, it is important to talk about driving and supporting integrated, joined-up health and social care across the system, in which we all believe. I know that those Members who are members of the Health Committee believe in that because I remember being a member of that Committee with the hon. Lady and the hon. Member for Easington. If we are to deliver better integrated care, we need to have the right data. One of the key challenges in the past is that we did not collect the data effectively to measure what good integrated care looks like. We know we need to improve the collection of those data, and we want people with long-term conditions such as diabetes, dementia and asthma to be better supported in their own homes and communities. Of course we need to have the data to do that. A lot of those data will come from primary care, and it is important that we put together those data and analyse them to understand what good care looks like. We have not been in the right place to deal with that in the past, but I am confident that we will be in the right place to do it while protecting patient confidentiality with the measures that we are seeking to implement.

[Barbara Keeley]

The point that I wanted to make is in line with what the Minister is saying. Following the revelations about IT issues that I mentioned, and the apology that his colleague the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison) made yesterday to the Commons, will he now agree that it would be sensible for Ministers and NHS England to consider keeping one copy of the care.data database and run staff queries against it, so that it is held in one place and not scattered about on various servers, causing consternation and the need for websites to be taken down, as they were yesterday, because NHS England does not know where the hospital data have gone? The only solution is the one that we discussed last week: keeping one copy and running staff queries against it.

[Dr Poulter]

It is absolutely right that the discussions that we have had in this debate and the issues raised about care.data have been helpful in building on the safeguards in the 2012 Act to improve the processes of the Health & Social Care Information Centre, as a new body, to ensure that it has particular regard to putting strong confidentiality criteria in place. It is also right to keep those criteria under regular review. Obviously, there is regular communication between that body and the Information Commissioner about issues such as protecting confidentiality.

I am sure that we have a robust set of criteria in place under the 2012 Act. It may be helpful to hon. Members if I outline what they are. I reassure the hon. Member for Birmingham, Hall Green that the data are not released for profit. It is about cost recovery when they are. It is also important to say that data are not released in identifiable form without a strong public policy reason: for example, in a civil emergency or some such situation. Data must be used for the benefit of the health and care system. That is a strong set of criteria for use of the data, and strong safeguards are in place. My right hon. Friend the Secretary of State has already put in place an opt-out for patients who do not want to be involved in the process, which has not been the case in the past.

It is important in this context to highlight that we are not taking a sudden, big-bang approach or change to data; this is an evolutionary process. In 1989, in-patient data were collected for the first time; in 2003, out-patient data; in 2007 and 2008, accident and emergency data. That was about improving and driving transparency, developing better care pathways for patients with, for example, chronic obstructive pulmonary disease and ensuring that we better used data to benefit the health service and patients. Now, when it is so important to drive better integration, primary care data will also be collected. That is not a revolutionary change; it is an evolutionary change. What is important is that now, under the 2012 Act, we have much stronger safeguards in place better to protect patient confidentiality and much more rigorous processes under which the Health & Social Care Information Centre, as a new body, will operate, in order to ensure that it regularly reviews its processes and uses data in the right way.

It is also important to say that my right hon. Friend the Secretary of State fully supports and is committed to the principles of the programme, which will alert the NHS where standards drop, enable prompt action to be taken, help staff understand what happens to people, especially those with long-term conditions, and help us develop and improve care. However, in order to reassure hon. Members further and bring greater clarity to some of the issues and discussions, we have tabled some amendments to the Care Bill. We will have an opportunity to discuss them fully next week when we debate the Bill. I am sure that when hon. Members see them, in conjunction with the safeguards already in place under the 2012 Act that were not there before, they will be reassured.

The programme is a good one. It is doing the right thing, improving research, driving up care standards in our NHS and supporting the integration of the health and care system, which we all believe in. It is also protecting patient confidentiality. With those reassurances, I close my remarks. I hope that hon. Members will take the opportunity next week to debate fully any further issues or concerns that they may have. I will bring them the reassurances that they need.