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NHS in England delays sharing of medical records NHS in England delays sharing of medical records
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NHS England is to delay the introduction of a system to share medical records after medical and patients' groups called for more time to raise awareness of how people can opt out and have confidence in the scheme. The NHS delayed for at least six months a controversial plan to share data from people's medical records on Tuesday following concerns from doctors and patients' groups, acknowledging there was insufficient public confidence in the scheme.
Under the original timetable, patients had until the start of April to opt out of the records-sharing system, which the NHS says will improve research into the outcome of treatments and allow drug and insurance companies to buy "pseudonymised" medical information. Last month, all 26m households in England were sent leaflets about the scheme, setting out the possible benefits and explaining how to decide whether to take part. The postponement by NHS England was welcomed by critics who had complained too many people did not properly understand the planned new system and the reasons for its introduction, or how they could opt out. Under the original plan, the first medical records were to have been compiled by the care.data system from the start of April.
In a statement, NHS England said the collection of data from GPs' surgeries would begin in the autumn – it did not give a more precise date – to permit "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". Supporters say that sharing data, which will include information from GPs' surgeries for the first time, as well as from hospitals, will make medical advances easier and ultimately save lives because it will allow researchers to investigate drug side-effects or the performance of hospital surgical units by tracking the impact on patients.
During this time NHS England will work with groups including the British Medical Association (BMA), the Royal College of General Practitioners (RCGP) and the consumer body Healthwatch to promote awareness, as well as looking to new means of building confidence in the scheme, formally known as care.data. But privacy experts have warned there will be no way for the public to work out who has their medical records, or to what use their data will be put. There have been questions raised about commercial companies buying data.
In the meanwhile, NHS England would work with a small number of GP practices on a voluntary basis to test the quality of the data collected, the statement added. Some doctors' groups complained that the scheme, while valuable, was poorly understood and badly explained by NHS England, which has said the majority of the data would be anonymised or made impossible for patients to be identified. All 26 million households in England were sent leaflets about the plan but polls showed about two-thirds of people had not seen them.
Tim Kelsey, national director for patients at NHS England, said it wanted to listen to patients' views. He said: "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. That is why we are extending the public awareness campaign by an extra six months." In a statement, NHS England said the collection of data from GPs' surgeries would now begin in the autumn – it did not give a more precise date – to permit "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".
Anna Bradley, chair 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. A delay so close to the proposed start of a major scheme is a significant embarrassment for the NHS and its attempts to inform the public about the benefits of the database. Labour's junior health minister, Jamie Reed, was quick to call the delay "another NHS shambles of this government's own making".
"Crucially they have agreed to Healthwatch England's request to see the roll-out of care.data delayed to allow more time to ensure the public are fully informed. Over the coming months the Healthwatch network will continue to play a key role listening to the concerns of local communities, helping to inform them about what's happening and working with NHS England to improve their communications with the public so each of us can make an informed decision." Tim Kelsey, national director for patients at NHS England, said: "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. That is why we are extending the public awareness campaign by an extra six months."
Professor Nigel Mathers, from the RCGP, said: "We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this pause. The extra time will provide it 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." The extracted information will contain a person's NHS number, date of birth, postcode, ethnicity and gender. Once live, organisations such as university research departments – but also insurers and drug companies – will be able to apply to the new Health and Social Care Information Centre to gain access to the database. Last year it emerged that the private health insurer Bupa was one of four firms that had been cleared to access sensitive patient data.
The RCGP has sent a letter to NHS England arguing that the delay should be used to clarify issues such as what data can be disclosed and who will decide this, and for a national campaign that highlights the option to opt out. The British Medical Association said on Tuesday it had become increasingly plain that people did not know enough about care.data and even with a delay the database should only be implemented with proper public backing.
Chaand Nagpaul, chair of the BMA's general practitioner's 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. Chaand Nagpaul, chair of the BMA's general practitioner's committee, said: "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."
"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." The Royal College of GPs called on NHS England to use the extra time to clarify aspects of the system, for example whether amber data – anonymous but containing details that could potentially identify an individual – will be provided for commercial use, and that information to third parties would not be sold for a profit.
The scheme's rollout has been beset by criticisms about the clarity of the information provided to the public. Earlier this month, the information commissioner's office criticised the campaign for failing to adequately explain what data was involved and how patients could avoid their medical records being shared. At the time, Kelsey agreed with some of the critics, saying: "Maybe we haven't been clear enough about the opt-out." Professor Nigel Mathers, honorary secretary of the RCGP, has written to NHS England suggesting a more thorough public information campaign, including TV adverts and a letter to each patient affected.
He said: "We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this pause. The extra time will provide it 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."
The scheme's rollout has been beset by criticisms about the clarity of the information provided to the public. Earlier this month, the information commissioner's office criticised the campaign for failing to adequately explain what data was involved and how patients could avoid their medical records being shared.
The delay came a day after the solicitors Leigh Day began a legal challenge on behalf of a campaign group, medConfidential, arguing the leaflet sent to households was misleading. The online campaign group 38 Degrees polled 150,000 people, of whom more than 90% said they would opt out.
Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities, said care.data was a good idea in principle that had been "stymied by its execution". She said: "Charities and their supporting patient groups have always said that sharing data for research can be a really valuable opportunity to speed medical research but it must be done with care, competence and consent."