Lincolnshire councillors hit out at NHS data sharing plans

Lincolnshire County Council’s Independent Group has criticised national plans to centralise data from GP practices.

NHS Digital announced a new General Practice Data for Planning And Research (GPDPR) service in May, which will allow pseudonymised patient data to be accessed faster and more efficiently by planners and researchers.

The Independent Group at LCC, however, fear patients have not been made aware of the plans, and that the data could be shared with, or sold on to, third party commercial organisations.

However, NHS Digital has denied selling data – saying it only charges those who access the data only for the costs associated with releasing it.

They said data is only shared with organisations who have a legal basis and meet strict criteria to use it for local, regional and  national  planning,  policy  development,  commissioning,  public health, and research purposes.

Councillor  Marianne Overton, Leader of the Independent Network, said the move was a “worrying direction” for government.

“There is too much centralisation of power already in this country, with who knows how much data being held on citizens,” she said.

Members also criticised a decision to force patients to opt out of the scheme, rather than opt in.

Councillor Richard Cleaver, the group’s lead on health, said NHS England was acting against the spirit of GDPR by requiring people to opt out.

Independent Group leader Councillor Phil Dilks said the move was similar to one which was shelved in 2014 and that patients needed to be made aware of the plans.

The group has promised to examine the plans closely through the council’s Health Scrutiny Committee.

| Photo: Joseph Verney for The Lincolnite

NHS Digital has said it does not sell data but does however charge those who want access for the costs of making the data available to them.

They say this is due to a lack of central funding and that the charges “only cover the cost of running the service” but do not make profits.

It said it will not allow data to be used solely for commercial purposes and will not approve requests for insurance or marketing purposes, promoting or selling products or services, or market research.

The organisation said data had been collected from GPs by other methods for the past 10 years.

A spokesperson said: “Patient data is used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives.

“During the pandemic, data from GPs has been used to benefit millions of us: helping to identify and protect the most vulnerable, roll out our world leading vaccine programme, and identify hospital treatments which have prevented people dying from covid.”

They said they had consulted with doctors, patients, data, privacy and ethics experts.

They added they took the “responsibility to safeguard patient data extremely seriously”.

Requests for access will need to be approved by the Independent Group Advising on the Release of Data (IGARD) and a GP Professional Advisory Group (PAG), with representatives from the British Medical Association and the Royal College of General Practitioners.

Data sharing will begin on July 1, 2021, and patients can contact their GP practice to register a “Type 1 Opt-out” at any time before June 23.

Those who opt-out after that date will see no more patient data shared, but any information NHS Digital holds at that point will still be held.