The Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, has called for NHS England to respond to more than 50 unanswered questions about the controversial Care.data scheme.
The data-sharing programme has been highly criticised over its plans for a centralised patient record database, resulting in several delays already.
Secretary of State Jeremy Hunt has confirmed that data will not be extracted from GP practice systems, including during the Pathfinder pilot phase of the programme, until Caldicott has advised him that she is satisfied with the programme’s proposals and safeguards.
The IIGOP’s report to the Care.data programme board lists 27 areas of concern and 52 questions relating to the handling of patient data that it wants answered.
It also lists seven tests that it requires the Pathfinder Clinical Commissioning Groups (CCGs) who are piloting the scheme to undertake.
These include a test to demonstrate that people in their area have a sufficient understanding of the choices on offer and the implications of making those choices.
Once the tests are completed and the IIGOP gets the information it wants, it would be “right and proper that the data extraction should proceed on an opt-out basis”, Caldicott said.
“We believe that this approach is consistent with the mandatory direction under the Health and Social Care Act 2012 for the HSCIC to collect the Care.data extract and the provisions and principles of the Data Protection Act 1998,” the report reads.
Phil Booth, co-ordinator of privacy campaigner MedConfidential, urged NHS England to handle the Care.data programme in a better way in 2015 than it has this year.
“Discussing questions to which they should already have answers with people they’ve been discussing with for months risks repeating the same failures over again,” he said.
The start date of the programme was delayed for six months from February 2014 after stinging criticism, and NHS chief executive Simon Stevens told MPs in May that the programme’s “artificial start date” should not be set in stone – suggesting that further delays were imminent.
Just a week ago, a report released by the All Party Parliamentary Group (APPG) for Patient and Public Involvement in Health and Social Care found that there had been a lack of clarity about the project.