UK Parliament / Open data

Health and Social Care Bill

My Lords, I broadly welcome these provisions, which deal with the new Health and Social Care Information Centre and put the existing special health authority on a statutory footing. The centre was established in 2005 by the Labour Government to improve information quality, data standards and access to information, to deliver the information required by front-line services and to support commissioning and clinical audit. The centre has had a large measure of success since its establishment, particularly in developing bedrock quality-improvement initiatives in the NHS—for example, indicators for quality improvement and patient-reported outcomes measures. NHS clinical teams have access to more than 200 indicators that are generally accepted as effective measures of high-quality care. However, while welcoming the broad intent and purpose of this Section, I note that the provisions increase the directions given to the information centre about when it should and should not publish data and how data should be used. It is clear in this context that there are serious concerns that the Government needs to address among noble Lords, patients and doctors' organisations about patient confidentiality, and about whether the Government's proposals go far enough to protect patient data. These concerns were also voiced in response to the Government's statement on UK life sciences industries in the House on 6 December, in which they announced their intention to share much more patient information with the private and independent sectors in anonymised form to aid medical research and development. As we know, under that initiative from December onwards data regarding 250,000 patients will be released online. I hope that the Minister will recognise these concerns and the need for what the chief executive of Cancer Research UK called, "““““strict safeguards that instil public confidence””." Clause 256 details when information should and should not be published by the information centre, and in particular that it should not publish data that could reveal a person's identity. Amendment 348B, tabled by the noble Lord, Lord Walton, would be the ultimate safeguard, but we recognise the need to find a way through that addresses concerns that doctor and GP-patient confidentiality could be harmed and provides safeguards that are strong enough to protect patients. It is certainly worth acknowledging that, if we are able to get the confidentiality issues right, the UK has a huge opportunity to lead the world in health research. We support Amendment 348A, tabled by my noble friend Lord Kennedy and other noble Lords. It would create an additional duty that would allow the information centre to request the information required to conduct clinical audits. This requirement would make it explicit that the centre can collect information from organisations identified in the Bill as required to undertake national clinical audits, thereby strengthening its current role of collating such information into a duty to collect clinical audit data from a variety of providers. We welcome this. Finally, in the debate on the UK life sciences industry Statement, my noble friend Lady Thornton underlined the difficulties with using anonymised data and sought reassurances from the Minister on how confidential patient data will be handled, stored and processed. I think it is right that the Minister repeats those assurances in the context of the provisions in the Bill for the information standards and the centre, and I will be grateful if he will do so.

About this proceeding contribution

Reference

733 c1801-2 

Session

2010-12

Chamber / Committee

House of Lords chamber
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