An independent watchdog has raised 27 questions about the troubled NHS England Care.data project, saying each must be answered for it to proceed.
The report by the Independent Information Governance Oversight Panel (IIGOP) said it would be “reasonable to proceed” with extracting patient data once satisfactory answers to the questions have been provided.
The report also poses seven tests which need to be met in each of the Care.data pilot projects to demonstrate that the programme has a robust framework and has efficiently informed patients about how their data will be shared under the scheme.
The IIGOP is chaired by Dame Fiona Caldicott who was appointed the first National Data Guardian for health and care, having completed a previous review of NHS data sharing in 2013. The report was produced for the Care.data programme board and its implementation leaders and raises fundamental questions which affect both patients and GPs.
While there are 27 questions listed in the report, many of them have multiple sub-questions which brings the total to over 50. Basic queries include how can NHS England let patients know that their data is safe? And how can GPs meet their legal responsibilities to comply with the Data Protection Act?
Meanwhile the report also stated that each pilot must be able to “demonstrate that people in the area have a sufficient understanding of the choices on offer and the implications of making those choices.”
The controversy surrounding the Care.data plan to expand collection of patient records to include general practices came to a head in February 2014 when failure to explain the benefits to the general public forced the NHS to put the roll-out on hold for six months.
Critics argued that the NHS had failed to educate the public about the scheme, leading to fears over how such personal data would be used, as well as an outcry that the scheme should be opt-in, rather than opt-out.
While pathfinder trials with four clinical commissioning groups (CCGs) began in October, a report by the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care and the Patients Association challenged the scheme yet again earlier this month. But the main concern of the IIGOP report is the lack of clarity about the project, and how patients and doctors are still unsure of how it will work.
“Clarity of policy and clarity of communications are both absolutely essential for gaining public and professional trust in the Care.data programme. This seems to be the area of most concern. The public, patients and care professionals must receive clear messages about Care.data,” said the report.
The watchdog also asks important questions about the safeguarding of data and how the Health and Social Care Information Centre (HSCIC) – which will hold the central patient data – will be held to account and assure governance around data publication and dissemination.
“What are the rules about dissemination? Who will get the data? Who will decide who gets the data? How will HSCIC enact the provisions of the Care Act 2014, particularly in relation to commercial uses of data? More generally, there seems to be no explicit statement that data extracted by the pathfinders cannot be shared offshore. Is this deliberate, or an oversight?” asks the report, stressing a lack of fundamental information about the project.
Phil Booth, coordinator at campaign group Medconfidental, welcomed the IIGOP report, and said there are still so many unanswered questions it would be fundamentally wrong to continue with the programme.
“Care.data has made a pig’s ear of explaining the position of this and providing the doctor with the information they need to inform the patients,” he said.
Booth said the involvement of Dame Fiona Caldicott means there is now a sensible measure of the programme and someone who has taken a look at Care.data and asked all the questions doctors and patients need answering.
“Our understanding is the thing can’t proceed until Dame Fiona is satisfied and signs off,” he said. “And with that many questions to answer, I’m sure NHS England has answers to some, but this is going to go around the houses.”
Booth stressed that Care.data has to be done right: “What I’d hate to see is just a bunch of tick-box type answers to some or all of those questions on the assumption they can just roll ahead.”
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