Plan to 'sell' medical records to private firms delayed

Pressure has been mounting on NHS England, the body behind the scheme, after doctors leaders said patients need to know how their data will be used outside the NHS.

Both the British Medical Association (BMA) and the Royal College of GPs (RCGP) have both warned that patients are being kept in the dark about the plans.

Health and social care services watchdog, Healthwatch Cornwall, is urging people to find out more about the scheme to extract patient data from GP records after raising concerns that the promotion of the scheme that extracts identifiable information has not been sufficiently publicised, that many people will not even know this is happening or that they have an opportunity to opt-out, and that there may be the potential to sell on details to third parties.

Chief executive of Healthwatch Cornwall Debbie Pritchard said: “Research is the backbone of Healthwatch Cornwall’s work and we appreciate how important data is when reviewing services, but people choose to share their experiences with us to help make positive improvements in care where needed.

“Our main issue with this scheme is around the lack of any major publicity and that it is an opt-out process rather than opt-in, as well as clarity around which third parties could access the information and how identifiable it is.”

Calls made by Healthwatch Cornwall to two GP practices have flagged up widely differing support and information about how to opt-out and the organisation would like to hear how people are finding the process at their own GP practice.

According to the information leaflet, which has meant to have been posted to all households, the personal data extracted will be used by those involved in providing care and health services to monitor how well they are doing, and where improvements need to be made.

NHS England has now said that the roll out of the scheme, that was due to take place in April, will now happen later this year.

A spokesman said: "To ensure that the concerns of the BMA, RCGP, Healthwatch and other groups are met, NHS England will b egin collecting data from GP surgeries in the Autumn, instead of April, to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to."

NHS England has said it will now work with patients and professional groups to promote awareness of the scheme.

"We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared," said Tim Kelsey, national director for patients and information at NHS England.

"That is why we are extending the public awareness campaign by an extra six months."

Chaand Nagpaul, chairman of the BMA's general practitioners committee, said: "With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of care.data.

 "While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted.

"This is all in the best interests of patients and GPs, and the BMA looks forward to working with NHS England to ensure that the public is properly informed and that safeguards are in place before uploads begin."

Professor Nigel Mathers, honorary secretary of the RCGP, said: "The extra time will provide (NHS England) with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people's data."

Anna Bradley, chairwoman of Healthwatch England, said: "This is a really positive move by NHS England. They have shown a willingness to listen to what the public have to say about the way their health and care services are run."

The idea behind the scheme is to link data from GP records with information from hospitals to give an idea of what happens to patients at all stages.

The data that will be extracted from GP systems includes information on family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.

It will also include biological values such as a patient's blood pressure, body mass index and cholesterol levels.

Personal confidential data (PCD) identifiers will also be taken, such as date of birth, postcode, NHS number and gender.

The written notes a GP makes during a consultation will not be extracted. The data will be held by the NHS Health and Social Care Information Centre (HSCIC) and anonymised by officials there.

Fully anonymised data will be made available publicly to anyone outside the NHS.

Data considered to be potentially identifiable - for example where a patient in a small town has a rare disease - will only be released to approved organisations for the specific purpose of benefiting the health and social care system.

NHS England plans to make this "amber" data available to organisations outside the NHS, such as medical charities, think-tanks, data analytics companies and universities.

Private firms such as pharmaceutical companies might also be able to obtain the data.

Geraint Lewis, chief data officer of the NHS, has said officials believe it "would be wrong to exclude private companies simply on ideological grounds".

He said: "Instead, the test should be how the company wants to use the data to improve NHS care."

Two polls for the Medical Protection Society (MPS) yesterday showed most patients have not yet received leaflets explaining the system and GPs fear patients will not be informed enough about opting out.

Of 1,400 members of the public, 67% have not received the leaflet from NHS England explaining the new system and 45% did not understand care.data from what they have read or heard.

A separate MPS survey of more than 600 GPs showed 80% felt they did not have a good understanding of how patient data would be used.

For Labour, shadow health minister Jamie Reed said the delay had become inevitable after ministers proved unable to answer key questions about their plans.

"This is another NHS shambles of this Government's own making," he said.

"Patients need to be assured that their records will be genuinely anonymous and that they have had the opportunity to opt-out.

"Ministers need to ensure these safeguards are in place and that it is the Secretary of State who is accountable for the use of patients' data."

Tory MP David Davis said the government had done the "right thing", adding: " In the first instance the Department of Health had intended to collect everybody's data without either explaining their actions or asking permission for the dramatic invasion of privacy that this would represent.

"As a result of objections to this they put out a wholly inadequate leaflet which appears to have been seen by a minority of the population, and which did not explain clearly the mechanism for opting out.

"Furthermore, the plan for opting out still involved collecting people's information, but only giving them the protection of the crudest anonymisation which would have been easily broken.

There is no doubt that a central database would have some significant medical value. However it does not need to be anything like as big as what is being proposed.

"Furthermore since it involves breaking doctor patient confidentiality, it should only be done with the explicit approval of the individuals concerned. Then the data so collected should be detected with the strongest possible security - something the Department of Health has not seen fit to detail to the public.

"Finally this data should only be accessible to licensed research teams on a controlled basis, and misuse of the data should be subject to criminal penalties."

It is entirely possible to devise a data collection system which meets all these requirements and I recommend the Department of Health start to consult properly with all the interested parties before taking the next steps on this project."