It is a real pleasure to follow the hon. Member for Totnes (Dr Wollaston), my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), the hon. Member for Truro and Falmouth (Sarah Newton), the hon. Member for Strangford (Jim Shannon), who made a typically excellent speech, and the Chair of the Health Committee, the right hon. Member for Charnwood (Mr Dorrell). I am really glad that the right hon. Gentleman did not miss the debate. The Health Committee did some excellent work in considering the issues before us, as we have heard during our debates yesterday and today.
I rise to speak to new clause 25 and amendment 29, tabled in my name and those of my hon. Friends. We are discussing these in light of clause 116, the Government’s new clause 34 and the dramatic events that have led to the cessation of the roll-out of the care.data scheme since we first expressed concerns in Committee about how the Government were treating the implementation of this vital project.
Let me be absolutely clear. Opposition Members—and, I am sure, most other Members—passionately want the care.data project to succeed. The failed implementation of the scheme to date is a matter of profound regret, and the shadow Secretary of State, my right hon. Friend the Member for Leigh (Andy Burnham), has offered cross-party support to help to salvage the project. We are serious about it and we want it to work. Many individuals have real and legitimate concerns relating to the use of their private medical records, but, as the academic and writer Ben Goldacre has pointed out,
“we learn how to save lives by studying huge datasets on the medical histories of millions of people. This information helps us identify the causes of cancer and heart disease; it helps us to spot side-effects from beneficial treatments, and switch patients to the safest drugs; it helps us spot failing hospitals, or rubbish surgeons; and it helps us spot the areas of greatest need in the NHS.”
He is undoubtedly right.
A growing population, an ageing population, the rise of co-morbidities and the necessary drive to improve the quality of care and the treatments available to patients mean that the success of the NHS will increasingly rely on the data to which it has access. The care.data scheme was meant to be designed to link together medical records from general practice with data from hospital activity, eventually extending to cover all care settings in which a patient receives treatment, inside and outside hospital.
The improvement of health care depends on removing the barriers between primary and secondary care, between the GP surgery and the district general hospital and between social care providers and traditional health care providers. Integration is key to meeting the needs of patients, and the availability of integrated data is central to shaping the services that will meet those needs. It is in that context that the need for the care.data project should be seen.
Given the real and tangible improvements that such a project could provide to our health care system, as well as the clear public benefits and what I believe is genuine political consensus surrounding the project, it really is inexplicable that we should now find ourselves at this point as a result of the Government’s rank incompetence in its implementation. The tragedy is not that this failure will draw political criticism, heated argument or the condemnation of campaigners outside the House of Commons; it is that it risks the project and jeopardises
the benefits that it could provide. That is the real tragedy. At stake here is the means by which we can improve the lives of millions of people. Also at stake is a way in which we can serve the people of our country by easing suffering, pain and distress. This is not simply an arid, technocratic Government data collection programme. The success of the project should be the concern of every single Member of this House. Why, then, has growing public fear about the programme led to the Government having to stop its implementation for six months? There are a number of reasons for that, and our new clause and amendment seek to address the issues that have led us to this point.
It is worth noting that many of the public and professional concerns that have led to the near-collapse of this vital project were raised in Committee. Unfortunately, the Minister described Opposition Members’ concerns as a “false debate” and a “straw man”. How he must regret those words. Had he listened to the concerns expressed by many in Committee, and had reasonable attention been paid to people with no party political axe to grind, we might well have found ourselves in a position in which the care.data scheme could have been successfully rolled out on schedule. As it is, the Minister has had to table a series of amendments to the position he was defending in Committee and, only weeks after he dismissed those widespread concerns, the implementation of the care.data scheme has ground to an enforced halt.
Given the need for the care.data scheme, and its likely benefits for patients, the Government should have adopted a profoundly different duty of care for the implementation of the scheme. The collection and use of data are becoming ever more contestable public issues. Whatever the data in question, when data relating to an individual are subject to collection, collation, analysis and investigation, individuals and society at large will always ask a standard set of questions: who wants these data; why do they want them; what will be done with them; what will the effect of this be; and in whose interests is this being done?
The sensitivity around personal information is always acute, but sensitivity and anxiety around personal medical information are understandably the most acute of all. When that sensitivity is set against the widely publicised issues relating to the National Security Agency of the United States, GCHQ in our own country and the broader emerging themes relating to how Governments in modern western democracies routinely gather and use data specific to individuals, the need for a considered, calm, detailed and honest approach to care.data could not be more important.
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The communication about care.data and the provision of safeguards around it were always going to be a difficult, fairly complex task. At the heart of this issue, however, is trust. It was always going to be difficult for any Government to ask the public to trust them on a matter of such sensitivity, in particular on health policy, but for this Government that notion was destroyed as soon as the reorganisation of the health service was introduced—a reorganisation that was deliberately hidden from the public before the election and which no one wanted or voted for. That duplicity probably destroyed at a stroke the notion of trust or, at least, made it exceptionally difficult to rebuild.
From such a fragile starting point and dealing with such a sensitive issue, the Government should have taken care to be scrupulously candid at every opportunity. Ministers ought not to have claimed that the Health and Social Care Information Centre would never make identifiable patient data available to third parties, whether medical research charities, pharmaceutical companies or university research programmes. Although it is true that the data will be pseudonymised, it is still possible for individuals to be re-identified from them. To claim otherwise is simply not accurate, and I suspect that Ministers know that.
Concern about how the HSCIC deals with applications for patient data and how such data will be used is now widespread. The Chair of the Health Committee has written to the Secretary of State asking for the details of which organisations have acquired medical records since 2010. The whole country will look forward to reading the detail of the Secretary of State’s reply.
In 2012, the Department for Work and Pensions tried to obtain access to confidential patient data so that they could be linked to information about employment, tax credits and benefit claims. The request was rejected. In the same year, however, the Institute and Faculty of Actuaries received the hospital records of 47 million people from between 1989 and 2010. Also, management consultants PA Consulting Group secured the
“entire start-to-finish HES dataset across all three areas of collection—inpatient, outpatient and A&E”,
and those data were uploaded to Google’s servers for use with Google’s other software. As the hon. Member for Totnes rightly pointed out, who consented to that? Perhaps the Minister can tell us when he responds.
Trust was damaged further when the Secretary of State claimed, incorrectly, that every house in the country had received a leaflet on care.data, informing them of the project, its purpose and how individuals could opt out if they wanted to. That is not true. A freedom of information request has revealed that NHS England did not ask for the leaflet to be classified as in “in exceptional circumstances”, so the leaflet has not been delivered to households registered with the Royal Mail’s door-to-door opt-out.