Changes to care.data debated in the Lords as part of the Care Bill

Written by Oz Flanagan on . Posted in News

The House of Lords has been debating amendments to the Care Bill that included a discussion of the stalled care.data project. The data sharing exercise was recently postponed by the government while it responded to concerns and criticisms about its implementation earlier this year.

The Lords accepted a new Clause to the Bill that had been introduced by the House of Commons. The Clause places a general duty on the Secretary of State to carry out their role ‘with respect to the need to respect and promote the privacy of recipients of health services and of adult social care in England’.

It states that the Health and Social Care Information Centre should share data only for the purposes of the provision of care or the promotion of health. It also requires the Information Centre to ‘have regard to any advice given to it by the committee appointed by the Health Research Authority.’

The government minister Earl Howe introduced the subject of care.data and stated the importance of the project by saying, ‘The care.data programme offers the ability to link existing data securely and safely in order to produce information that can save lives, quickly find new treatments and cures, and support research to benefit all of us.’

Lord Hunt of Kings Heath praised the idea behind care.data, ‘There is no question that the NHS has a rich reservoir of patient information. If we can exploit it to the full, its use could enhance care, aid early diagnosis and be a rich source of data.’

However, he then went on to criticise its introduction. ‘The problem is that the centre and NHS England have botched its implementation, so much so that the scheme had to be withdrawn, originally for six months until the autumn.’ Lord Hunt also stated that he agreed with the RSS view on care.data and that ‘a robust response to restore public confidence’ is now needed.

In his address to the house, Lord Owen proposed an amendment to set up a statutory ‘oversight panel’ to offer independent advice on patient data. He added that, ‘The medical profession is not the only body that ought to be considered in this. The Royal Statistical Society has made it clear that oversight and public trust in enforcement could improve the situation. It says that a new statutory body is likely to be needed to fulfil this role. Statisticians are as worried about the loss of confidence that is developing over medical data as anyone in the medical profession - they are the actual people who handle this.’

Lord Owen’s amendment was defeated following a vote. An amendment put forward by Lord Turnberg that would have allowed data to be only released for biomedical and health research was also defeated.

The Care Bill will now return to the House of Commons on May 12 for consideration of the changes made in the Lords.

Health & Medicine National Health Service care.data

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