Whose health is it anyway?: enabling participation

• public participation
• doctor-patient relationship
• evidence based medicine

Current policy rhetoric promises the public and patients wider participation in decisions about health care, and in the research that informs it, with an implication that participation is likely to generate substantial health benefits. However, it is not yet clear what can be done to make it happen effectively.

The British National Health Service (NHS) was built on an ethos of community spirit, solidarity, and sharing. Current media coverage suggests that this ethos has now been replaced by individualism and the blame culture for which Britain is now rightly infamous. As a result, the focus of participation seems to have become complaint rather than constructive debate. Compensation for adverse events that occurred when the risks were unknown has been described as a “moral right” (M Smith (Scottish Health Committee Chair), BBC Radio Scotland, Thursday 9 Jan 2002). Yet there is no logical or ethical leap from individual freedom to be healthy to a societal obligation to provide the services that might improve that health. A screening test that, by definition, does not provide certainty leads to accusations of negligence by the screeners when false negatives become known. The drive to report “medical error” and the National Patient Safety Association are two of the manifestations in 2001 that reflect the government’s moves to deal with the loss of trust and respect that has been so loudly expressed.

It should not be denied that mistakes and adverse events occur, but the current response to them fails to acknowledge that risk is a part of all aspects of life including science and medical care, and especially at the cutting edge of new techniques before they have been observed in practice. This sets a false basis for any discussion. If the aim of greater …