The confidentiality of medical records is threatened by government plans to relax laws on data protection, doctors' leaders told the Guardian yesterday. Dr Hamish Meldrum, chairman of the British Medical Association, said the profession was "extremely concerned" about legislation tabled by Jack Straw, the justice secretary, which would allow the Department of Health to share information on NHS databases with other ministries and private companies.
A woman with breast cancer is found to carry a mutation that predisposed her to her condition. Her two sisters and brother may also carry the mutation. Informing them of this would allow them to consider screening and perhaps take steps to prevent the onset of the disease or the passing of the mutation to their unborn children. Not informing them could mean the sisters will also develop breast cancer, as might the eventual daughter of the patient's brother. The patient is at liberty to tell her siblings that they might want to think about screening, but her doctors are not. Patient confidentiality laws prevent them. But is this morally right? Does the breaking of confidentiality outweigh the good that could be done by doctors informing the patient's relatives? Is it time to change patient confidentiality laws? The findings of a group of researchers have led its members to suggest that it is.
The medical professions are to press the justice secretary, Jack Straw, today to exempt personal medical records from the widespread data-sharing powers in his coroners and justice bill. A letter from eight healthcare organisations states they have "grave concerns" that clause 152 of the bill would grant unprecedented powers to access people's confidential medical records.
Concerns about data sharing may undermine doctors’ and patients’ confidence Committee stage discussions in parliament are currently under way on the Coroners and Justice Bill. Although most of the clauses relate to amendments to the coronial system, clause 152 is receiving substantial attention in the press. Clause 152 would allow all government departments to use a fast track procedure to share data without parliamentary debate. It includes a provision that allows ministers to "remove or modify any legal barrier to data sharing." The explanatory notes say that, "This could be by repealing or amending other primary legislation, changing any other rule of law (for example, the application of the common law to confidentiality to defined circumstances), or creating a new power to share information where that power is currently absent."
GPs’ representatives voted overwhelmingly this week for a system in which patients opt in to any sharing of medical data with third parties—rather than one in which their consent is assumed unless they opt out, the system favoured by the Department of Health. Clinical confidentiality depends on GPs being the prime data holder of their patients’ medical records, said the BMA’s annual conference of local medical committee representatives in London. It also strongly opposed using implied consent as justification for releasing information on named patients.
Leading GP bodies have given their support to new guidance on how patients’ medical records should be used in medical research. The guidance, published this week by the medical charity the Wellcome Trust, aims to make it clearer to GPs and researchers how they can ensure that medical records are used safely in research. The report says that patients’ records in general practice are a unique source of information that can help medical researchers improve their understanding of disease, develop potential new treatments, and improve care.
Patient records in general practice surgeries are a unique resource that can provide evidence to help medical researchers improve their understanding of disease, develop potential new treatments and improve patient care. But patient information is both sensitive and private, and the security of personal data must be safeguarded. There is considerable uncertainty about the processes that should be used when information from patient records is required for research. The best practice guidance described in this document was developed during a national consensus meeting held at the Wellcome Trust in 2008 with GPs, researchers and patient groups. It is intended as the first step in a process to ensure that patients and GPs have confidence in the processes used to access patient information.
The Medical Protection Society (MPS) is seeking clarification about the position of doctors who become aware that their patient is considering ending their life in circumstances that might amount to criminal charges. The recent House of Lords decision requiring the Director of Public Prosecutions (DPP) to look at the factors which would be taken into account in deciding whether to bring a prosecution in such cases is helpful. Much of the debate so far has focused on whether relatives or spouses should face prosecution for assisted suicide, but there also needs to be discussion over the difficult position health professionals may find themselves in. Currently, most patients will travel outside the UK, for example to the Swiss clinic Dignitas for an assisted suicide.
A woman who found out she had HIV when she was pregnant with twins was infected by her boyfriend who had known he had the virus for nine years. She was among four women unaware that Mark Devereaux, 41, had the virus when they had unprotected sex with him. The 28-year-old woman chose to have an abortion after discovering she had contracted the virus. Devereaux admitted four charges of culpable and reckless conduct. Sentence was deferred for reports.
GPs are considering whether to abandon their involvement in a scheme to put medical records on a computer database. BBC News understands that talks are continuing to try to make it easier for patients to opt out of the system. Thirty million people in England have already been formally contacted about the computer record. Health ministers from the coalition government insist the rollout will continue.
Patients in England will be able to inspect and correct their NHS and social care records online from 2015 if the coalition government’s vision for the use of IT in the NHS becomes reality.
The mother of a teenage girl who died from anorexia has called for hospitals to change the way they treat young people as they become adults. Vickie Townsend's daughter, Laura Willmott, died from complications caused by the eating disorder. Townsend told an inquest that as the former public schoolgirl approached her 18th birthday, medical staff stopped informing her of her daughter's progress.