Information and education via the Internet
Arguably, the Internet is the greatest game-changer ever seen. It wields immense power – for good, and for evil. Perhaps it is the risk of the latter that still limits the acceptance of the first. True, every Tom, Dick or Harry can jumble its capacity to provide people with true help by confusing cyberspace with half-truths or misdirection.
As a doctor who has long used the Internet to answer questions and pleas for help from dialysis patients, I have been acutely aware of pitfalls in this practice and of the risks I have taken. The risk that advice given in good faith may be the wrong advice – especially as the patient seeking advice is unknown to me... and the risk that my professional peers might think my efforts meddlesome, or worse.
Yet, after reviewing the 'Get Answers' section at http://forums.homedialysis.org, I feel reassured on two points: (1) the questions have mostly been true 'cri de coeur' (cries from the heart) or have sought simply worded and understandable explanations to complex problems; (2) the answers as given – at least to my mind – have made a fair fist of combining balance with simplicity. But, as one of those who have provided answers at that site, I accept that I may be guilty of framing a biased and 'leading' view.
In two months time, I am to give an address to a significant Australasian dialysis professionals' forum on the use of the Internet as a patient-directed information and education medium. But... is it? And, if it does serve that purpose, does it do it well? Further, do the questions asked and answers given ever reach beyond the questioner – or, are the questions asked (and answered) of too personal or private a nature to be of use to others... or to be shared with them? If the latter, is privacy not then being cruelly invaded by the very medium used to provide the answer, even if the questioner asked the private question via a shared medium?
It seems timely, even if only for a few responses, to ask you – the dialysis professionals – to share your opinion of medically-oriented Internet advice sites. Do these sites help, or further confuse? Have sites you have seen and that your patients use seem trustworthy, or do they foster dodgy medicine? Did any of the advice received lead your patient(s) to an improved outcome or did it simply inflame you, the 'proper doctor'?
Is the advice believed by or useful to you, the face-to-face physician? Or, on the contrary, did you feel threatened by or resent 'the intrusion' of the 'Internet advisor' into your private professional-patient relationship?
If – on balance – you deem the Internet useful, then how might the use of 'good site' be spread more widely to the benefit of more patients? And, lastly, how might the worth of a valuable site be independently assessed or 'accredited'?
Feedback on all or any of these questions – for better or worse – is welcomed.