NHS in England delays sharing of medical records

NHS England has delayed the launch of care.data, and the sharing of patient health care records. Photograph: Dominic Lipinski/PA

NHS England is to delay the introduction of a method to share healthcare information after healthcare and patients’ groups called for far more time to increase awareness of how people can opt out and have self confidence in the scheme.

Beneath the original timetable, individuals had right up until the commence of April to opt out of the information-sharing technique, which the NHS says will improve study into the final result of treatments and permit drug and insurance firms to get “pseudonymised” health care data. Last month, all 26m households in England had been sent leaflets about the scheme, setting out the achievable rewards and explaining how to make a decision regardless of whether to consider element.

In a statement, NHS England explained the collection of data from GPs’ surgeries would start in the autumn – it did not give a more exact date – to permit “much more time to create understanding of the benefits of using the information, what safeguards are in spot, and how folks can opt out if they select to”.

In the course of this time NHS England will work with groups including the British Health-related Association (BMA), the Royal School of Standard Practitioners (RCGP) and the customer body Healthwatch to advertise awareness, as effectively as hunting to new means of constructing self-confidence in the scheme, formally identified as care.data.

In the meanwhile, NHS England would work with a modest variety of GP practices on a voluntary basis to check the quality of the information collected, the statement added.

Tim Kelsey, nationwide director for patients at NHS England, said it needed to listen to patients’ views. He explained: “We have been advised extremely plainly that sufferers need a lot more time to find out about the rewards of sharing info and their right to object to their info getting shared. That is why we are extending the public awareness campaign by an further 6 months.”

Anna Bradley, chair of Healthwatch England, explained: “This is a truly constructive move by NHS England. They have proven a willingness to pay attention to what the public have to say about the way their well being and care providers are run.

“Crucially they have agreed to Healthwatch England’s request to see the roll-out of care.data delayed to permit much more time to guarantee the public are fully informed. Above the coming months the Healthwatch network will carry on to perform a essential role listening to the issues of regional communities, assisting to inform them about what’s happening and functioning with NHS England to increase their communications with the public so every of us can make an informed determination.”

Professor Nigel Mathers, from the RCGP, stated: “We would like to thank NHS England for listening to the considerations of RCGP members and for acting so swiftly to announce this pause. The further time will supply it with the likelihood to redouble its efforts to inform every patient of their proper to opt out, each and every GP of how the programme will function, and the nation of what robust safeguards will be in location to defend the safety of people’s data.”

The RCGP has sent a letter to NHS England arguing that the delay need to be used to clarify concerns this kind of as what data can be disclosed and who will decide this, and for a national campaign that highlights the choice to opt out.

Chaand Nagpaul, chair of the BMA’s general practitioner’s committee, stated: “With just weeks to go until the uploading of patient data was scheduled to get started, it was clear from GPs on the ground that patients remain inadequately informed about the implications of care.data.

“Although the BMA is supportive of using anonymised data to strategy and increase the top quality of NHS care for individuals, this should only be completed with the support and consent of the public, and it is only proper that they fully realize what the proposals mean to them and what their rights are if they do not want their data to be extracted.”

The scheme’s rollout has been beset by criticisms about the clarity of the information provided to the public. Earlier this month, the data commissioner’s workplace criticised the campaign for failing to adequately describe what data was concerned and how sufferers could avoid their medical records being shared. At the time, Kelsey agreed with some of the critics, saying: “Maybe we haven’t been clear sufficient about the opt-out.”

NHS in England delays sharing of medical records