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The controversial Care.data programme to create a database of NHS patient records in England is about to restart, with pilot schemes set to begin later this month.
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One of four “pathfinder” trials, in the Blackburn with Darwen region, has announced plans to start communicating with GP patients to explain their rights to opt out of the system. The Blackburn with Darwen Clinical Commissioning Group subsequently expects to upload patient record data to the central database between September and November 2015.
In total, 104 GP practices will be involved with the trials, with the other areas in Somerset, Hampshire and Leeds. Care.data aims to create a national database of GP-held medical records to allow better analysis of health trends and improve patient care.
Work on the Care.data roll-out was stopped in February 2014 when failure to explain the benefits to the public forced NHS England to put the project on hold, initially for six months. It was subsequently delayed even further as a result of more criticism, including a report from the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care and the Patients Association that challenged the scheme yet again in December 2014.
Critics argued that the NHS had failed to educate the public about the scheme, leading to fears over how personal medical data would be used, as well as an outcry that the scheme should be opt-in, rather than opt-out.
“Patients and the public are broadly supportive of the principle of using health data for research that is in the public interest. However, many people still have deep concerns about the programme and are worried about how their personal data will be used,” Patients Association chief executive Katherine Murphy said at the time.
There was further controversy earlier this month, after it emerged that at least 700,000 people opted out of Care.data before the scrapped roll-out in 2014, but the NHS still shared their data with insurers and other services. The Health and Social Care Information Centre, which will process the data on behalf of NHS England, said it did not have the resources to process that many opt-outs.
Privacy campaigners say there are still too many problems remaining with Care.data to proceed with the trials.
“It beggars belief that Care.data should be restarted before the serious outstanding problems with the scheme have been fixed and, just as importantly, been seen to be fixed. The shambolic mess that Care.data has become must be cleared up before another single patient is contacted,” said co-ordinator of campaign group MedConfidential, Phil Booth.
“NHS England must make good on every opt-out, and demonstrate that every last promise and safeguard is in place, or it’ll show it cares more about getting hold of your most sensitive data than ensuring every use of it will be consensual, safe and transparent.”
In December 2014, the independent watchdog set up to oversee Care.data highlighted 27 questions about the troubled project that must be answered for it to proceed. The Independent Information Governance Oversight Panel said it would be “reasonable to proceed” with extracting patient data only once satisfactory answers to the questions have been provided.
Read more about Care.data
- The NHS’s Care.data scheme faced more delays due to concerns over lack of publicity and clarity of the proposed programme
- Without the Care.data programme, the health service will not have a future, according to Tim Kelsey, national director for patients and information, NHS England