Individual or public goodBMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b2475 (Published 18 June 2009) Cite this as: BMJ 2009;338:b2475
- Fiona Godlee, editor, BMJ
This week, general practitioners’ representatives gave a vote of no confidence in the UK government’s plans for sharing patients’ data. If fully implemented, the NHS summary care record would put basic patient information on a national database. Delegates at the BMA’s annual conference of local medical committees voted overwhelmingly against the idea of implied consent for sharing data with third parties (doi:10.1136/bmj.b2441). Patients should be asked to opt in rather than opt out, they said.
The failings of the government’s IT programme and concerns about clinical confidentiality must be largely to blame for this lack of confidence in the system. But our report of the debate suggests a dose of vested interest as well. Being the prime data holder of patients’ medical records was seen by one speaker as “the last bargaining card” against the privatisation of general practice. This doesn’t seem a good reason to advise patients against taking part. The Royal College of General Practitioners now takes a different view. In a rapid response posted this week, its leaders say that they are ready to recommend the summary care record to patients because, in their view, governance and security are now guaranteed (http://www.bmj.com/cgi/eletters/338/jun15_1/b2441).
Which of them is right in terms of the patients’ best interests will depend on how good the system is and what potential harms might result when data are leaked or misused. In an editorial, Julian Sheather asks us to look beyond the confusion of interests to find sound principles on which to base the contract between patients and their health system (doi:10.1136/bmj.b2160). As in so many aspects of health care, the rights and needs of the individual can be in tension with the public interest. An absolute requirement for consent to use data for non-clinical purposes, such as audit and research, would impede the large data flows needed for high quality health care, he says. “Perhaps in time we could seek to balance rights to health care with duties to share information for reasonable health related purposes.”
Sheather has a second piece in this week’s journal that on first reading seems to express a different view on the balance between individual autonomy and public good (doi:10.1136/bmj.b2414). During a science festival debate about the risks of surgery, he was shocked to find surgeons and patients united against the obstacles that ethical considerations throw up between innovative surgeons and vulnerable patients. A few patients have died, but think of the thousands saved by new techniques, the audience said—the desire for public good seeming to triumph. In this case Sheather comes down on the side of the individual. The public interest is all well and good, but which of us would want to be the sacrificial lamb, he asks.
Can we hope to strike an intelligent balance between individual patients’ rights and health as a collective social enterprise? On the basis of these excellent articles, I would have to say no. Our choices will differ in different circumstances, and much will depend on the potential for serious harm. But let’s be clear whose interests we are serving.
Cite this as: BMJ 2009;338:b2475