care.data


Ben Goldacre writes in The Guardian: I am embarrassed. Last week I wrote in support of the government’s plans to collect and share the medical records of all patients in the NHS, albeit with massive caveats. The research opportunities are huge, but we already knew that the implementation was chaotic, with poor public information, partly because the checks and balances on who gets access to data – and how – have not yet been devised or implemented. When you’re proposing to share our most private medical records, vague promises and an imaginary regulatory framework are not reassuring. Now it’s worse. On Monday, the Health and Social Care Information Centre admitted giving the insurance industry the coded hospital records of millions of patients, pseudonymised, but re-identifiable by anyone with malicious intent, as I explained last week. These were crunched by actuaries into tables showing the likelihood of death depending on various […]

Care.data is in chaos. It breaks my heart


Conrad Quilty-Harper writes for the Daily Mirror: The launch of a controversial database which would centralise access to GP surgeries healthcare records has been delayed from April until Autumn. Why? Let’s start at the beginning, this stuff is quite complicated. What is care.data? The NHS wants to share data collected at GP surgeries about individual patients so researchers can find ways to improve healthcare and generally make the NHS more efficient. Since 1989, researchers have been able to request hospital episode statistics including billions of records from hospital visits. Care.data will open up the data behind about 300 million patient consultations every year at GP surgeries. The controversial bit is that this involves using identifiable information — like people’s date of birth, full postcode, NHS number or gender — to connect the data together. The NHS says the data is protected, but people are still worried about the implications for […]

Why should you care about care.data?


Nick Triggle writes for the BBC: There comes a point when the weight of criticism becomes so much that the dam bursts. For NHS England – and its Care.data project – that point was reached on Tuesday. When you have a group of bodies as disparate as the British Medical Association, privacy campaign group Big Brother Watch and the Association of Medical Research Charities united in their condemnation, you know you have a problem. The organisation has defused the problem for now by agreeing to delay the data-sharing project by six months. But how did it get to this point? After all, the concept of the giant database has the backing of almost the entire medical community, many charities and some of the most influential patient groups.

Care.data: How did it go so wrong?



Charlie Cooper writes for the Independent: Controversial plans to trawl patient records from every GP surgery in England have been put on hold, amid concerns from doctors and ministers that the public have not been properly informed about how their private data will be used. The care.data programme, which was scheduled to begin collecting the confidential information from GPs in April, will now be delayed until the autumn, NHS England has announced. The pause will allow the NHS more time to inform people about “ the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to,” officials said. The Department of Health has grown increasingly concerned in recent weeks that NHS England has not sufficiently reassured the public – nor the medical profession – about how the care.data programme would benefit patients. Critics have also warned that the private data, […]

Victory for privacy as NHS database is delayed


Nigel Praities writes for Pulse: A substantial number of GPs are so uneasy about NHS England’s plans to share patient data that they intend to opt their own records out of the care.data scheme, reveals a Pulse snapshot survey. The survey of nearly 400 GP respondents conducted this week found the profession split over whether to support the care.data scheme, with 41% saying they intend to opt-out, 43% saying they would not opt-out and 16% undecided. The snapshot survey gives the first indication of GP opinion over the scheme, and comes as leaflets with information about the care.data programme are in the process of being sent to every household in England.

Over 40% of GPs intend to opt themselves out of ...


Lis Evenstad writes for EHI magazine: A leading privacy campaigner has condemned NHS England’s £1m leaflet drop about care.data for not including an ‘opt-out’ form. Phil Booth, co-founder of the medConfidential campaign, told EHI that the leaflet, which is supposed to inform patients about the programme and advise them that they can opt-out, said the failure to include an easy way for them to do this was “ridiculous”. “There’s no opt-out form in the leaflet. This is ridiculous. If you’re going to send out this you have to include an opt-out form,” he said. The leaflet drop is part of a £2m public awareness campaign being run by NHS England and the Health and Social Care Information Centre about care.data, which will expand the Hospital Episode Statistics and link them to other healthcare data sets, starting with information extracted from GP practices. An estimated 22m homes will receive a leaflet […]

Care.data campaign leaflet slammed



1
Alex Matthews-King writes in Pulse: A GP has taken the decision to automatically opt all of his patients out of the care.data extract scheme despite being told it is “against the law to do so”. The GP in Oxford, who wished to remain anonymous, has sent a letter to students and staff at the university “with a further letter to be sent to his non-university patient population shortly” to inform them they will have to opt in to the scheme if they wish to have their data used by NHS England. He was taking this approach, which he understands is against the law, because of fears that the information will be misused and will not be fully anonymous as the Government has promised. Under the scheme, patient identifiable data from GP records will be extracted using the General Practice Extraction System and shared with the Health and Social Care Information […]

GP takes ‘unlawful’ decision to opt patients out of care.data ...