Many have some awareness of the proposed data extraction scheme, in which identifiable data will be extracted from an individual’s GP records and sent to the Health and Social Care Information Centre, but to date there had been an expectation that when it was introduced there would be widespread public information made available. This was anticipated to explain what was being done, and why, so patients understood which aspects of their data were being accessed and used, in what form and the purpose behind it.
However NHS England has just announced that they have ruled out a national publicity scheme and instead it will be GP practices’ obligation to inform patients about the changes. Practices will also be required to provide the public with information on how they can raise an objection to their data being shared. It is understood that it will be left to individual practices to decide how they inform patients and what they tell them – although some information materials are being produced.
With all responsibility resting at the door of GP practices, they could therefore be liable where there is a failure to comply with Data Protection Act requirements. GPs will need to inform patients of which data they are required to share and also to provide details of how people can raise an objection if they wish to stop their information from being used in this way. Such objections must be made formally and deemed ‘reasonable’ – yet it is still to be seen what the criteria for considering something ‘reasonable’ will be.
Philippa Luscombe, partner in the clinical negligence team at Penningtons Solicitors, said: “There are some real benefits to be achieved from this kind of data extraction – if it helps to allocate resources properly and identify trends in health problems and health care then this is an achievement. However, patients are clearly sensitive about what is in their records – and the ability to be open with their medical practitioners is critical in the delivery of good treatment. It is therefore integral that individuals understand what information is being used and in what format.
“It seems that the burden of both managing this process and of properly informing and advising patients rests with GPs – who are busy as they are. It is a shame that a nationwide campaign explaining the scheme could not have been implemented rather than adding to their responsibilities. Instead we are faced with a scenario where different practices may provide different information to patients and the public perception of the safety and benefits of the scheme may vary according to information provided.”