June 2001
All practising clinicians are becoming used to patients arriving at the clinic clutching bundles of printed pages from the Internet. Such an information explosion is to be welcomed when patients are selective and sensible about the source of the material they gather. All agree that many web sites contain weird, if not zany, material. Official web sites of large organisations contain information from impeccable sources, such as well conducted clinical trials of sufficient power to suggest a probable correct view. Patients now have as much quality information as the average doctor and sometimes are better informed and up-to-date. This underlines the imperative for doctors to be similarly totally up-to-date and this will be one of the standards of clinical governance. It is inevitable that in individual areas of knowledge disputes may arise among the professionals due to lack of evidence from clinical trials. This must drive the system to initiate further well conducted clinical trials. Such an example is documented in the current issue "Playing the waiting game - the asymptomatic patient with recurrent ovarian cancer detected only by rising Ca125 levels".
The patient is unique as she is a senior scientist who has access to the Internet and has identified all the quality international web sites and has now read every report relevant to her own case and on the interactive sites has made contact with a host of patients with similar problems. Her knowledge is now extensive and unique and now clearly identifies a lacuna of scientific evidence and management consensus. Bravely she has written about her personal story (she does not wish to be anonymous) highlighting her own thoughts and concerns.
The paper has been reviewed by five of Scotland’s most senior gynaecologists and three specialist gynaecological oncologists. There was no consensus of thought. I suspect that this will be the forerunner of many such stories which will require much thought to optimally resolve.
Correspondence on this issue will be welcome.