Let me assure the noble Baroness that I was not trying to opt out of my duty to respond.
I thank all noble Lords for their contributions to this important debate. I reassure many noble Lords across the House that when I first became a Minister, I had many of these questions myself—and I continue to have them, if I am perfectly honest.
I will turn first to the amendments before deciding how to go forward, as it were. In response to Amendment 298, Clause 81 explicitly mentions NHS England as a body to which mandatory information standards can be applied. As set out in this clause, the exact procedure for publishing information standards, as well as any procedure for granting waivers in respect of compliance with these standards, will be set out in regulations subject to parliamentary scrutiny under the affirmative procedure. The regulations may set out limits on the circumstances in which a waiver may be granted. For example, a temporary waiver might be considered where an organisation does not have funding in place to implement the required changes.
The noble Lord, Lord Hunt, also referred to accredited data access environments and rightly acknowledges that their function is not just to support research but for analysis to support service planning, as well as
other essential activity. I believe that we are fulfilling our promises to the profession and the public at the moment, but clearly more could be done. We have made clear that data collection for General Practice Data for Planning and Research will now begin only when: first, we have in place the ability to delete data if patients choose to opt out of sharing their GP data with NHS Digital; secondly, a trusted research environment is available, where approved researchers can work securely on deidentified patient data; and, lastly, a campaign of engagement and communication has increased public awareness, explaining how data is used and patient choices.
In addition, the Government have committed to developing, this year, rules for such data environments in the NHS, including technical specifications and a framework for accreditation. However, while we expect secure data environments to be appropriate for the vast majority of uses, there are likely to be exceptions. For example, where patient consent has been given for data to be made available to an external researcher or organisation, or where there is a court order requiring data, it may have to leave the secure data environment. I assure the noble Lord that we will continue to examine how secure data environments operate and are governed, to make sure that they are fit for the future.
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Regarding Amendment 300, we remain committed to ensuring that data is used transparently, proportionately and safely. There are strict legal, privacy and security controls on when organisations can share data and for what purposes. Many noble Lords have rightly spoken about concerns in the past. Having the right information at the right time in the hands of health and care professionals, as noble Lords acknowledged, saves lives. We hope that the shared care records will allow those involved in providing care to access health and care records safely, so that they can provide care in a better, joined-up way as people move between different parts of the health and social care system. Allowing people to opt out of shared care records would have serious negative impacts on the effective delivery of care, but, clearly, we must get the balance absolutely right with those who wish to opt out and what that would mean for their standard of care.
Amendment 302 requires providers and commissioners of publicly funded health and care services to collect data relevant to Healthwatch’s functions. This goes beyond the intention of Clause 82. It would create an additional burden on different organisations in the sector, as it would impose further data requirements on multiple organisations. In relation to Amendment 303, it is already the case that any relevant local Healthwatch, or Healthwatch England, can require anonymous information under the proposed powers in Clause 82 as public bodies exercising functions in connection with the provision of health services or of adult social care in England.
Quickly turning to Amendment 304, while I agree with the noble Lord on the importance of NHS Digital having regard to research and planning and individual choice, these amendments are not necessary to achieve this. Clause 83 amends the list of matters that NHS Digital must have regard to when exercising its functions.
It adds that NHS Digital must have regard to the need to promote the effective and efficient planning, development, and provision of health services and of adult social care in England. Planning is already included in this, and research is also covered by that wording, as it is intrinsic to those activities. Similarly, NHS Digital’s current requirement to have regard to the need to respect and promote the privacy of recipients of health services and adult social care implicitly includes the individual’s choice to opt out.
On Amendment 305, it is important that people have a choice about how their healthcare data is used and that they can trust that their data and their choices will be treated with respect. The final version of our health and social care data strategy will build people’s trust and confidence in how their data and information are used to improve health and care. The strategy will commit to co-designing, with patient groups and stakeholders, a transparency statement setting out how health and care data has been used across the sector.
On Amendment 305A, to bring investment in data-driven healthcare and bring value back to the NHS from its data, these aims are underscored by key commitments in the Government’s Life Sciences Vision and the draft Data Saves Lives strategy for health and social care. These commitments will better enable data- driven innovation, generating long-term benefits for the NHS, patients and the public. The value return from data partnerships goes beyond direct financial return or income, and includes access to technology that improves patient care, reduces pressure on the NHS workforce, and supports UK companies and taxpayers. Once again, it is important to recognise the patient’s right to opt out and their right to know how their data is being used. Our guidance, Creating the Right Framework to Realise the Benefits for Patients and the NHS Where Data Underpins Innovation, sets out the need for NHS organisations to ensure fair terms for not just their organisation but the NHS as a whole.
I turn to Amendment 307. I am very grateful to the noble Baroness, Lady Tyler, and other noble Lords who attended the meeting last week to discuss this. We recognise that there is a great deal of support for adopting a consistent child identifier; it is seen as key to supporting effective information sharing, but also to making sure that children do not fall between the gaps. The Department of Health and Social Care, the Department for Education and the Home Office are working together to develop cross-government, multi-agency proposals for improving the sharing of information for safeguarding purposes. Clearly, in the context of this debate, many noble Lords would prefer that it was the NHS number: if this were an education debate, the request might well be that it was the education number, and similarly if it were a Home Office debate. We want to get this absolutely right, and the Department for Education will be leading a multidisciplinary deep dive looking at the feasibility of a common child identifier, and we will consider other ways to facilitate the sharing of data through the existing child protection information sharing system.
I have to say, as a bit of a geek and having done databases in the past, that effectively the NHS number is a primary key.