Policing of information from internet breast cancer list: Findings may not be generally applicable

BMJ 2006; 332 doi: https://doi.org/10.1136/bmj.332.7549.1095-a (Published 04 May 2006) Cite this as: BMJ 2006;332:1095
  1. Ketan K Dhatariya (ketan.dhatariya{at}nnuh.nhs.uk), consultant endocrinologist
  1. Norfolk and Norwich University Hospital NHS Trust, Norwich, Norfolk, NR4 7UY

    EDITOR—The article by Esquivel et al is misleading in some respects.1 Their findings result from internet correspondence between individuals about a common condition that is given a lot of webspace and media attention.

    My own (anecdotal) experience shows that a vast amount of ignorance remains when rarer conditions are considered. Between 2001 and 2003 I attempted to recruit women with hypoadrenalism for a study looking into adrenal hormone replacement. As this condition is very rare, I resorted to advertising for subjects on two websites, those of self help groups for hypoadrenalism (after this had been approved by the ethics committee).

    I managed to recruit sufficient numbers for the study but kept myself enrolled to check on progress among my volunteers until mid-2005. I was surprised to see the depth of inaccuracy and distinct lack of knowledge among the people who posted on the sites. I refused to be drawn into discussions, as I would have ended up being the group doctor, which I had no intention of becoming. The one person on those sites who seemed to be giving the most information was a laboratory technician whose wife had hypoadrenalism.

    Furthermore, from personal experience and that of my colleagues, the ever increasing band of “informed” patients who come to clinic armed with items they “found on the web,” that vary from wildly inaccurate to frankly amusing, shows that many people refer to the web, but that an awful lot of non-sense is to be found there.

    I have no problem with tackling the fears and questions of concerned patients, but when having to contradict the perceived wisdom of the all powerful internet, I wonder whether this is yet another reason to consider early retirement.


    • Competing interests None declared.


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