In a recent consultation the Department of Health outlined plans to establish a network of regional data centres across the country to provide medical researchers and NHS managers with access to millions of people’s personal medical records.
There are concerns that officials have not learnt the lessons of the controversial care.data programme. Like care.data, the "accredited safe havens" (ASH) scheme is intended to only provide access to records that have been stripped of all personal details.
However, under the current plans the ASH programme will go ahead without the additional assurances that were provided for care.data by the Secretary of State.
We are calling on the Rt.Hon Mr Hunt to extend these assurances, create a single regulatory regime for different uses of patient records and ensure that people have the right to opt out of all government data sharing projects.
This should include:
- Rigid rules about what data each project will be able to access
- Clear policy about the sale of data to third parties
- Outline of timescales and exactly when the ASHs will start operating (original outline suggested they would be operational by the end of the year).
- ASHs accreditation to not be as a one off process, with organisations having to be revalidated every three to five years to ensure use of the data is properly audited
- A clear plan for communicating with the public about the plans and commitment to provide people with a single opt-out to all data sharing initiatives
Our Chair, Anna Bradley, said:
"We applaud the Secretary of State for taking the time to listen to and address patients' concerns over care.data. The assurances he put in place gave us more confidence in the way GP records will be used and how the right to object to having our own files shared will be implemented.
"But these additional assurances must be extended to all health and social care data sharing initiatives otherwise the Accredited Safe Havens project will end up being seen as 'Big Brother's little brother'.
"The public need to know that if they decide to opt-out of one medical record sharing programme, their wishes will be respected across all such projects."
We are raising these concerns as NHS England announces its four pathfinder areas for testing its revised plans for the care.data programme.
As part of NHS England’s testing phase, local Healthwatch in each of these areas are being invited to play a role in assessing the level of engagement with the local community.
This follows the Healthwatch network's initial concerns around care.data, which were instrumental in securing the pause to the full national roll out.
Whilst we reserve judgement on the overall feasibility and next steps for the care.data programme as a whole, it is encouraging that NHS England has worked with us and other patient groups to really take on board the public's concerns.