The Health and Social Care Information Centre (HSCIC) is to open a new secure data facility (SDF) in March 2015 that could be used to support the Pathfinder stage of the controversial care.data programme.
A HSCIC spokesperson told Computing that the facility, which is in Leeds, would allow access to a limited number of approved researchers. Approved applicants will be able to use and analyse patient data but not take the information away from the site.
“There will be tight regulations in place to ensure that any resulting analysis which is taken away is in anonymised form,” the spokesperson said.
But despite preparing the SDF to be ready by March, patient data may not necessarily be extracted straight away, the spokesperson said. They added that the March deadline was only to ensure that support and technical facilities were ready, but that this would not determine the timeframe of the care.data programme.
However, the Leeds SDF is not the only option for the care.data scheme, with three other solutions also being considered.
These are mentioned in the progress report on the Partridge review as:
– A partnership across two or more organisations to provide a network of secure data facilities, whereby data remains in the HSCIC but can be accessed from these secure settings
– Secure remote access – this enables virtual access to data remotely and securely, with data remaining in the HSCIC
– Public and open data – this enables a wide range of people who need to use data to ‘self-serve’ and look at anonymised information rather than needing to request bespoke data.
The HSCIC spokesperson stated that the next step is to take the four potential solutions to an ‘expert reference group’, comprising researchers, state research institutions, charities, patient representatives and commissioning bodies.
“The role of this group will be to further help the HSCIC flesh out which of the identified options should be developed further. We will aim to ask the group to propose a way forward by spring next year. We plan to implement a new secure access service by December 2015 for some data sets,” the spokesperson said.
Care.data has been hampered by delays after being criticised by privacy campaigners and doctors. Most recently, the Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, called for NHS England to respond to more than 50 unanswered questions about the scheme.
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.