I absolutely share those concerns. We did not hear anything last night that reassured anybody who understands the Bill. Certainly, Government new clause 34 is not worth the paper that it was hastily written on, and I want to move on to that right now.
Surely it is not too much to expect the democratically elected politician who sits in Cabinet and is responsible for the national health service to be accountable for how the medical data that that service captures is used. Crucially, the Secretary of State for Health is accountable not only to this House but to the people of this country in a way that a quango cannot be and has never been. Such accountability can begin the process of building the trust necessary to ensure the success of projects such as care.data. Without that, QED, the Secretary of State is asking Parliament and the people of this country for permission to remove democratic accountability
from how their confidential medical data are used. The implications for the use of patient data in any project are utterly toxic.
I said earlier that it would be tragic if the Government’s failings were to continue to contribute towards the erosion of trust in care.data. Sadly, the Bill provides scope for other regrets. Part 1 seeks to make worthwhile but modest improvements to our care system, falling a long way short of the concept of whole-person care articulated by Labour. The Government new clauses and amendments that we are now discussing, however, and clause 119—the hospital closure clause that we will discuss later—fundamentally disfigure what is without doubt a worthwhile Bill. Perhaps that shows us the two sides of the coalition in the ministerial team. We shall see. None the less, it is a cause for regret.
Trust is at the heart of Government new clause 34. Yesterday, the Minister tried to reassure the House that the new clause would provide the safeguards that people require for the protection of their confidential medical data. He demonstrably failed to do that. Challenged time and again to illustrate how his new clause would facilitate the claims he has made for it, or improve safeguards for patients, he could not do so. Next time, it might be a good idea if the Secretary of State could get the same person to write both the Government amendments and the Government press release, because the amendments and the new clause do not provide what the Government claim that they will. Sadly, that erodes trust yet further.
New clause 34 has been made necessary due to the appalling handling of the care.data project by the Government and the resulting erosion of public trust. The truth is that the new clause was hastily tabled again just before the deadline for amendments because the original, botched new clause 14 did not do what the Government said it would. Guess what? New clause 34 does not do what they say it will either. Subsection (3) would amend section 261 of the Health and Social Care Act 2012 to read:
“The Information Centre may disseminate (other than by way of publication), to any such persons and in such form and manner and at such times as it considers appropriate.
But the Information Centre may do so only if it considers that disseminating the information would be for the purposes of—
(a) the provision of health care or adult social care;
(b) the promotion of health.”
Yesterday, the Minister was given numerous opportunities to explain how this provision would prohibit private health insurance companies from gaining access to our data—he could not do so. The new clause provides for entirely elastic definitions that, in practice, will have a limitless application.
What happens when a private health insurance company requests information from the HSCIC on the basis that it was going to conduct specific controlled, randomised assessments of the impact of physical activity on various age groups in order to promote and recommend appropriate physical activity to its policyholders— perhaps with a view to reducing their premiums? That is clearly being used to promote health and well-being, so how would new clause 34 stop it? It would not—under the proposed wording, it would be facilitated. Once such a company has the data, what prevents it from using them for other
means? Under our new clause 25, such use would be a clear offence, but sadly the Government have offered no such safeguards.
It is no wonder the public cannot trust Ministers. Just a few weeks ago, in Committee room 9, the Minister assured me and the rest of the Public Bill Committee:
“There are strict controls about the release of potentially identifiable information; for example, that type of information would only ever be released to approved organisations for approved purposes”.––[Official Report, Care Public Bill Committee, 30 January 2014; c. 516.]
Yet these strict controls fail to appear time and again. The only comfort offered to the public is that those issues will be resolved by regulations drafted by Ministers in whom confidence and trust has been lost—that is not good enough. With that in mind, can the Minister explain who signed off the release of data covering 47 million patients that were obtained by the Institute and Faculty of Actuaries? Such issues must be addressed, and it seems likely that when he eventually responds to the Chair of the Health Committee, the Secretary of State will give cause for yet further concern about how patient data are being used.
In responding to the news about that massive data breach, a Department of Health source stated:
“The rules changed last year so this would no longer be allowed. Information like this can only be accessed now if there is a clear benefit to improving health or health systems.”
It is chaos: if the rules have already been changed, the new clause tabled in haste by the Minister is full of superfluous subsections. Why does he need to change the rules again if they have already been changed?
We have a golden opportunity to get this right. The more that patients allow their data to be used, the greater the positive effects of care.data. These issues will not be resolved today and they will not be resolved by any of the Government proposals before us. If we want care.data and schemes like it to work in the future, we need to establish trust. Getting this right will save lives. Accountability is critical when accessing and using the most sensitive personal data, and the whole House can send a message to the people of this country—that we understand their concerns, that we are serious about safeguarding their most private data and that we are determined to continue to improve our health services—by voting for new clause 25 and amendment 29.