UK Parliament / Open data

Health and Social Care Bill

Proceeding contribution from Baroness Wheeler (Labour) in the House of Lords on Tuesday, 13 March 2012. It occurred during Debate on bills on Health and Social Care Bill.
My Lords, I welcome and support the government amendments in this group. In Committee, I stressed our strong support for placing the Health and Social Care Information Centre on a firmer statutory footing and replacing the current special health authority. The centre, male-midwived by my noble friend Lord Warner, as he put it, was set up by the Labour Government and has enjoyed a large measure of success, particularly in developing the bedrock quality improvement initiatives in the NHS. I stressed then that if we are able to get the patient confidentiality issues right, the UK has a huge opportunity to lead the world in health research. The government amendments go a long way towards meeting the concerns expressed by me and other noble Lords on safeguarding patient confidentiality and the need to place a greater emphasis on obtaining consent from the patient when this information is collected or published. The information centre now has to obtain consent before it publishes information that could identify a person. The new clause in Amendment 268, in particular, which establishes what type of information is confidential and how the information centre must deal with information, is a major step forward, as is the new clause outlined in Amendment 289 requiring the information centre to develop a code of conduct on confidential information. The noble Earl quoted me from Committee stressing the need for safeguards that are strong enough to protect patients. As that is the first time that I have ever been quoted by the Government, I think I can legitimately claim credit for the subsequent amendments. The extra safeguards to protect patients—for example, detailing when the Secretary of State can request information and who can request the information centre to collect information, and ensuring that consent must be obtained where the information is deemed confidential—are all vital to ensure public and patient confidence that information will be properly acquired, stored, used and published. We also strongly support Amendment 268, limiting the range of bodies that can request that the information centre collect personal or confidential information to principal bodies, such as Monitor, CQC or NICE, which are able to make a mandatory request because they have obtained consent and have the power under statute. On the code of conduct, I hope that the noble Earl will assure us that there will be widespread consultation on the development of a code. I should also be grateful if he could reassure the House that the code will provide further detail about the proposed mechanisms that the centre will need to obtain the consent of patients. It is obviously important that we get this issue right. What will be the process for obtaining consent where people are unable to provide it—for example, patients who are unable to make decisions for themselves under the Mental Capacity Act 2006? Finally, the Government's Statement in the House on 6 December on UK life sciences announced their intention to share much more patient information with the private and independent sectors in an anonymised form to aid medical research and development. I believe that there are to be discussions with the BMA and other appropriate organisations on that matter to ensure strict safeguards that will instil public confidence. We particularly want to be clear how the Government will judge to which companies they will make that information available and what criteria they will use in those circumstances. I should be grateful if the Minister could update the House on progress on that issue.

About this proceeding contribution

Reference

736 c209-10 

Session

2010-12

Chamber / Committee

House of Lords chamber
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