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."
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 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.