Commons Amendments

Part of Care Bill [HL] – in the House of Lords at 6:15 pm on 7th May 2014.

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Photo of Earl Howe Earl Howe The Parliamentary Under-Secretary of State for Health 6:15 pm, 7th May 2014

At the same time, if anyone is going to come up with a better solution, now is the time. I have not heard one. In all seriousness, however, all GPs are well aware of the duty of patient confidentiality. I have never met a GP who has not been aware of that and conscientious about it.

The noble Earl, Lord Erroll, took us to the subject of the proposed European general data protection regulation, which is of considerable concern to the Government. We believe that clinical research is already highly regulated in the UK, so that the interests of privacy are effectively balanced against the value to the public that the research will deliver. The data protection proposals will, as I am sure he is aware, be subject to the co-decision of the European Parliament, the Council of the European Union and the 28 member states. Officials from the Department of Health are working closely with the Ministry of Justice, which leads on the negotiations with the EU on the UK's behalf, ensuring that stakeholders are engaged on key issues such as consent, the use of pseudonymised data, and when the legitimate interests of data controllers can be applied in order to process personal data.

We have also flagged up our concerns with MEPs on specific issues, including the narrowing of the exemption from consent generally and in relation to a rigid reliance on consent or pseudonymous data in order to process data. We strongly agree that we need to take a very firm position on research within the Council and are resisting all changes that would make the use of health data for research more problematic.

I turn now to the amendments themselves. In doing so, I not only thank the noble Lords who spoke to them, but particularly thank my noble friends Lord Lester,

Lord Ribeiro and Lady Brinton for their supportive comments about the Government’s amendments and the Government’s position generally.

Amendments 45E and 45F would place Dame Fiona Caldicott’s independent advisory panel on information governance on a statutory footing to provide advice on information governance across the health and care system. It would require the Secretary of State and NHS England to have regard to its advice when making directions to the Health and Social Care Information Centre under Section 254(1) of the 2012 Act. The Secretary of State would also be required to have regard to its advice when making regulations to establish an accreditation scheme for private sector information providers. The amendment would also revoke directions made to the information centre by NHS England in 2013 to implement the care.data programme and to establish data services for commissioners.

Let me say immediately that we are sympathetic to the desire to see the oversight panel placed on a statutory footing. In an area as complex and important as information governance, it is essential that we have a source of clear, authoritative advice, available to all parts of the health and care system, which creates the right conditions for informed judgments to be made on the use of information, and on decisions to share or not to share. When the Secretary of State asked Dame Fiona Caldicott to chair the Independent Information Governance Oversight Panel, it was in recognition of her extensive knowledge and experience in this area. I agree with the noble Lord, Lord Turnberg, that Dame Fiona is uniquely well placed to lead the panel in providing strong, visible leadership to the health and care sector. It is our clear intention that the panel be best supported to do this. My department continues to work closely with Dame Fiona to ensure that the panel is equipped to deliver the role it has been charged with performing.

There may well be merit in establishing the panel in law and giving legal force to its advice on data sharing. I strongly feel, however, that on this important matter, so crucial to people’s privacy and confidentiality, to the safe and efficient operation of the health and care system, and to the research agenda, it is vital that we ensure the system of oversight, scrutiny and advice is robust and coherent. I undertake that we will explore with Dame Fiona Caldicott and all interested parties how best to achieve this, which may include using existing legal powers to establish an independent committee able to advise on data-sharing matters. Dame Fiona Caldicott has confirmed that she would explore options on existing legal powers to establish an independent committee and has noted the importance of considering further and clarifying the functions of the panel before doing so. I hope that those statements, as far as they go—and they are intended to be helpful—will reassure the noble Lord, Lord Owen, and other noble Lords.

I turn now to the directions made to the HSCIC by NHS England in 2013, covering the establishment of data services for commissioners and the implementation of the care.data programme, which would be revoked by this amendment. These directions, inter alia, describe the intended operation of the patient opt-out processes in the event that a patient objects to his or her information being shared. A key focus of NHS England’s engagement activity is to ensure that the opt-out process is implemented in a way that reflects the outcome of the listening exercise, and this will need to be reflected in the new directions to the HSCIC. As there will be new directions, it is not necessary and would be inappropriate to use primary legislation to revoke the current directions.

With those assurances and with a commitment to ensure that the oversight panel is supported to deliver its objectives—including a commitment to explore using existing legal powers to establish an independent committee to advise on data sharing—I hope that the noble Lord will see fit to withdraw his amendment.

It may be helpful to address Amendments 45C and 45D together as they cover very similar ground and, I believe, have similar intent. Amendment 45C would narrow the purposes for which the information centre may disseminate anonymised and certain other information under its general dissemination power. Government Amendment 45 provides that the information centre may disseminate information under its general dissemination power only for the purposes of the provision of health care or adult social care, or for the promotion of health. This amendment would replace the latter of these purposes with “biomedical and health research”, with the effect of curtailing dissemination for any other health promotion purpose. Amendment 45D seeks to define the health promotion purposes for which the HSCIC may share anonymised and certain other information under its general dissemination power in regulations.

I understand the concerns raised by some noble Lords that government Amendment 45 would allow commercial companies—including fast food and tobacco companies, for example—to access information under this provision for commercial gain. I hope I can offer reassurance that the scope of this provision will enable us to tap the potential of the wealth of data available for research, while explicitly preventing the use of such data for purposes that will not promote health.

However, let me be clear, especially to my noble friend Lady Brinton, that the permitted purposes for general dissemination of anonymised and certain other information, as defined by government Amendment 45, would not allow information to be shared for purposes that have no provision of healthcare or adult social care or health promotion aspect, such as to enable insurance companies to raise their premiums.

Defining the purposes for which the information centre may share anonymised and certain other information in this way means that government Amendment 45 will support the sharing of information for a broad range of valuable health or adult social care research, and for wider public health purposes. While this would permit the sharing of data with commercial organisations—I think there is a recognition that that is something that we should continue to do—information would be shared only if it were for genuine provision of health or adult social care or health promotion purposes, and not for purposes with no such aspect. For the avoidance of doubt, this is further underpinned by government Amendment 45, which would impose a new duty on the information centre to respect and promote the privacy of people receiving health and adult social care services in England in everything it does.

In contrast, Amendment 45C would prevent the information centre sharing information for an array of desirable and valuable purposes; for example, such a definition would not permit dissemination for the purposes of informing planning decisions, in order to avoid a potentially negative impact of environmental factors on the health of communities affected by a planning decision, including town planning and the provision of green spaces. I reassure the noble Lord, Lord Turnberg, that all biomedical and epidemiological research would be covered by the promotion of health definition. Therefore, I can confirm that, as drafted, the government amendment does not do what I think the noble Lord fears that it does: it does not omit biomedical and health research.

If we are to benefit fully from the wealth of health and social care data available in England, it is essential that we do not inadvertently shut off dissemination for the many laudable purposes that do not fall within the more narrow bounds proposed in the noble Lord’s amendment. The law is already clear that the information centre may not release data that could be used to identify an individual, other than a provider, without a legal basis to do so, and amendments made in the other place would make the information centre’s publication or other dissemination of any information that could be used to identify an individual subject to external, independent statutory advice by the Confidentiality Advisory Group.

I think the only question that I have not addressed is that from the noble Lord, Lord Hunt of Kings Heath, about the timetable for the implementation of the care.data programme. I think I am right in saying that the new NHS chief executive Simon Stevens has said that care.data should go ahead when it is ready and that need not mean six months; it could well be longer.

With those assurances, I hope that the noble Lord will feel able to withdraw his Amendment 45C.