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Parliament debates the use of patient data as part of the Care.data programme

The Government's Care Bill was debated in the House of Lords last week. The Bill, which is nearing the end of its legislative journey, will reform the law relating to the care and support for adults. The Bill also now includes details about how data will be released by the Health and Social Care Information Centre (HSCIC) as part of the Care.data programme.  
 
Earlier this year NHS England announced a pause in the roll out of Care.data.  As we told the Health Select Committee in the House of Commons, Care.data is a good idea that has been badly executed with a lack of public awareness about the programme and concern over who would be accessing the data and for what purposes. 
 
To try and address some of these concerns about the confidentiality of patient data, the Government added a number of amendments to the Care Bill as it made its way through Parliament.
 
The Government inserted a duty on HSCIC to protect and promote the privacy of patients, which we supported, and a clause that would only allow the HSCIC to give access to patient data for the purposes of:
  1. the provision of health care or adult social care, or 
  2. the promotion of health.
 
While we support the aim of the latter amendment to clarify and restrict the purposes for which patient data can be accessed, we do not think that this wording will be effective in doing this. The wording is too vague to rule out the use of data by insurance companies or by the food industry for marketing campaigns. Equally, it is too vague to make sure that medical researchers can access the data to carry out vital, life-saving research. 
 
The debate last Wednesday gave the House of Lords the opportunity to consider the amendments made in the House of Commons, including the ones added by the Government on Care.data.
 
Several Peers had tabled amendments that tried to strengthen the government’s proposed safeguards. Our scientific adviser, Lord Turnberg tabled one to replace the “promotion of health” with wording that would specify that data could be released for the purposes of biomedical and health research. Unfortunately this amendment, along with several other similar amendments, were voted down by the Government. The Bill now goes back to the Commons for the final sign off of the amendments before being passed into law later this year.
 
While the amendments we supported were not successful, we are seeking a meeting with the Care.data team in NHS England shortly to discuss our concerns. With our partners we will continue to make the case to government that appropriate sharing of patient information has huge potential to drive progress in medical research and healthcare, but to do this people must be confident that their personal information will be kept secure.