The experience of Sara, a retired academic, is a cautionary one for NHS patients who think they control what’s on their medical records.
In a pilot scheme NHS England recently began quietly uploading patient records from 100 GP surgeries, although the information commissioner warned the health service “there is still a lot of work to be undertaken to ensure that all of the obligations of the Data Protection Act will be met before national roll-out ... can begin.”
Some are disturbed by the strategy to go “digital by default”. Andrew Miller, chair of the Commons science and technology committee, wrote to Cabinet Office minister Francis Maude with concerns that “as public services go online, the government may not keep up with advances in technology and that inadequacies in government software may lead to security vulnerabilities”.
The NHS is of particular concern as patient data is supposed to be anonymised. Martyn Thomas, vice-president of the Royal Academy of Engineering and chair of the IT policy panel of the Institution of Engineering and Technology, told the committee that personally identifiable data in medical records could be matched against other datasets. “That has been demonstrated time and time again. Therefore, the notion of useful anonymised personal data is an oxymoron.”
Phil Booth, co-ordinator at patient privacy group medConfidential, said that though the changes are “momentous”, not enough has been done to explain what they mean for patients. “A few breezily-worded leaflets in your GP’s waiting room isn’t proper notification for the systematic hoovering up of confidential information from 50 million peoples’ medical records. So much for choice and consent – patients are deliberately being kept in the dark.”Challenging the medical establishment’s ownership of her patient record left Sara without access to a regular GP. Her plight is at the heart of a tussle between bureaucrats and the public, with ministers publishing draft guidance for citizens to be able to remove “data whenever (they) want”.
Sara’s ordeal began in September 2011, when her GP wrote a referral letter to a hospital consultant about her treatment which included information on a traumatic episode imparted to her previous GP in 1995, but which she was unaware was still on her medical record.
Fortunately, having sight of the letter before it was sent, and extremely shocked that it had been included, she asked the practice to remove it, as it had ‘‘no relevance.’’ The information was removed, and a revised letter was sent.
Sara’s GP practice in Essex, initially apologised for the error. In correspondence seen by the Guardian, a partner in the practice thanked her for “raising the issue of unnecessary disclosure of previous sensitive history regarding your referral.” The practice said she had highlighted “an intrinsic weakness in [its] referral template system.” She then asked the practice to remove the “deeply distressing” and sensitive material from her medical record, but the practice refused.
After three months of trying to find a solution with the surgery and the primary care trust (PCT), she took action under Section 10 of the Data Protection Act 1998, which allows patients to request removal of information from medical records if it is “likely to cause substantial damage or distress”. But the practice claimed it had a “legal responsibility” to keep her record up to date.
In early 2012, despite several requests to involve an independent conciliator, the practice wrote that it considered the matter “closed” and refused to enter into further discussion.
Sara went to court but lost in December 2012. Although the judge accepted that “substantial distress” continued to be caused” by the information being held on the record, he said that he had to effect a “balancing exercise”, which was specifically “should the claimant’s very strongly felt wishes be allowed to override the views of health professionals as to what is in her best interests”. He said that in the circumstances, he found in favour of the defendants – the practice – but added: “I feel the greatest of sympathy for the claimant. What happened when the referral letter was written simply should not have happened under any circumstances. The fact that it happened, not surprisingly, makes her fear that it may well happen again.”
Sara has since removed her medical records from the practice and they are now held by NHS England. She does not want to register with another practice, as the unamended records would follow her there. She has been told she can be seen as “temporary resident” if she needs treatment, although she has lived in the area for 60 years.
Sara believes that the Medical Defence Union, acting on behalf of the practice, may be using hers as a test case to set a precedent, a view supported by the fact that the MDU employed one of the leading barristers in the field, Richard Spearman QC, to fight the case.
“The Data Protection Act is not the public’s friend,” says Sara. “It is slanted towards the data controller [in this case, the practice] and the subject doesn’t seem to have enough rights and what rights they do have are difficult to enforce. I’m 65 and this is a life-changing amount of money to have to pay and is a great worry. We are asked to trust our doctors but I feel that this trust has been completely destroyed.”I would say that we all need to be very careful when we tell our doctor anything that is deeply personal and private because, from my experience, there seem to be very few safeguards.”
The surgery, where Sara’s former GP is a partner, issued a statement through the MDU: “We are sorry to hear that such concerns have been expressed regarding the outcome of this complaint. We take our responsibilities as data controllers very seriously and have reviewed our processes to ensure they comply with the law and ethical guidance. The court order made in this case upheld the continuing processing of the information concerned. We cannot comment further on the case because of our duty of patient confidentiality.”
This article was amended on 16 December 2022 to remove some personal information.