The European Court of Human Rights found a violation of the Article 8 right of an HIV-positive opthalmic nurse whose electronic health records were accessed by her colleagues (who were not involved in her medical care), after which her employment contract was not renewed.
The UK government has quietly dropped a passage in the draft handbook to the NHS constitution that said that ministers had decided to give researchers the right to trawl medical records for research participants without the need for patients’ consent. Organisations that are charged with safeguarding patient confidentiality had objected strongly to a section in the draft handbook that said, "Patients can . . . expect that a health professional or a research professional who owes the same duty of confidentiality as a health professional may use care records, in confidence, to identify whether they are suitable to participate in approved clinical trials. Appropriate patients will be notified of opportunities to join in, and will be free to choose whether they wish to do so, after a full explanation."
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.
The purpose of oral presentations in rounds is to tell the patient’s story. The narrative helps the healthcare team make sense of the patient’s situation and provide safe, effective care. Although the stories should be comprehensive, they are often incomplete. The ethical aspects are omitted. At present the healthcare team has to tease these out from a heap of medical information. Sometimes the ethical issues stay buried in the heap, unnoticed. To reduce the risk of the clinical obscuring the ethical, a new section is needed in patients’ notes. The new category, named "ethical issues," would consist of a short list of headings. It would not require much time to complete, nor would it require much knowledge of medical ethics. It would make explicit the key ethical issues of a case, helping to anticipate their emergence or aggravation. The team can then implement strategies to deal with them.
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.
New guidelines issued by the UK General Medical Council (GMC) will allow doctors to disclose genetic information to relatives - even when patients object, if there are compelling medical reasons for doing so. The guidance, which comes into effect on 12 October, acknowledges that confidentiality is not always absolute; disclosing information about a genetic link to a disease may protect another individual from serious harm. For example, if a patient is diagnosed with a hereditary form of cancer, a doctor will now be able to inform relatives about the potential risk the genetic link could carry. Awareness of such a genetic risk could prompt investigation for the genetic mutation responsible and regular screening, thereby improving the chance of early detection and long-term prognosis.
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.