Valerie raises concerns with the handling of NHS patients’ data

On Wednesday 21 January 2015 the Health Select Committee, of which Valerie is a member, heard evidence on Sam Smith, medConfidential; Nicola Perrin, Wellcome Trust; Professor Nigel Mathers, Honorary Secretary, Royal College of General Practitioners; Tim Kelsey, National Director for Patients and Information, NHS England; and Dame Fiona Caldicott, Chairman, Oxford University Hospitals NHS Trust gave evidence.

Valerie said:

“ required Clinical Commissioning Groups for their pathfinder project, but it was clear that not all CCGs were asked if they would like to participate. Patients in the CCGs that are participating in the pathfinder have still not been informed.”

“There are a number of organisation involved in These are: General Practice Extraction System Independent Advisory Group, the Data Access Advisory Group, HSCIC’s Confidentiality Advisory Group, the Independent Information Governance Oversight Panel, the Expert Reference Group; and the Pathfinder Programme Board. None of the witnesses was sure how these organisations fit together.”

“ comes with significant risks to patient data and before this can proceed these risks must be properly managed. This process should not be about saving drug companies from doing their own clinical trials and work. Patients must be aware what information about them has been passed on. Individuals could be asked for consent rather than having to opt out of this system. There must be appropriate safeguards to access patient data as patient data can never be 100% safe.”

“Tim Kelsey did not know the costs of the pathfinder scheme. Mr Kelsey said he would write to the committee but I find this concerning that the cost of this has not been agreed and signed off by the Department of Health.”

“Dame Fiona Caldicott is the guardian of data within the NHS with the responsibility to preserve the public’s trust in how the data are to be safeguarded and shared appropriately. Dame Fiona reports directly to the Secretary of State for Health and is forming a committee but it is still recruiting members. Dame Fiona said to me that they would produce an organogram of how the organisation would work together. In terms of sanctions for breaches of data privacy Dame Fiona said that they must be ‘deliberate’breaches which will be hard to prove, the safeguards that are in place must be a lot stronger.”

“I asked Dame Fiona who the best person to write to within the NHS if someone has concerns about their data. Dame Caldicott did not know who a patient should write to if they are concerned with the way their data is handled, but she did provide me with her email address: [email protected] as she was unaware of the postal address.”

More information of the Health Select Committee’s inquiry into the Handling of NHS Patient Data is available here:

A letter from Kingsley Manning, Chair of the Health and Social Care Information Centre, setting out the use of patient data can be read here: