Intended for healthcare professionals

Editorials

The first generation of e-patients

BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.328.7449.1148 (Published 13 May 2004) Cite this as: BMJ 2004;328:1148

Response to "The first generation of e-patients"

As a former college professor in disability retirement, this
editorial was very meaningful to me. First, I have been diagnosed as
being in the early stages of cortico-basal ganglionic degeneration, a rare
neurodegenerative disease called CBGD (or CBD), which one author has
characterized as "isolating" in nature--few others have the condition; in
fact some physicians have never heard of it. So in a way I feel very much
alone. Secondly, I have been told that I have an "academic personality,"
i.e., the need to research the living daylights out of anything which
concerns or interests me. I am slowly learning how to be an effective e-
researcher and to dabble into e-communication with strangers--medical and
lay people alike--which is something I still find a bit frightening at
times.

Several years prior to my diagnosis, I was sidetracked from e-medical
research by two doctors with specialities not related to my current
condition. These men seemed to find Internet use both threatening and
annoying. One, in particular, didn't like it when I asked him about a
certain blood test to detect ovarian cancer. He wanted to know whether I
had gotten information off the Internet. Then he went on to tell me how
some patients get on the Internet and automatically think they are
doctors.

I don't think it is coincidental that this physician misled me about
the potential seriousness of my condition, apparently because he felt I
couldn't handle the truth. I was later told by another doctor that this
man had performed surgery "on you because he thought you had cancer." I
did not turn out to have anything serious, but the patronizing assumptions
this doctor made about me fit perfectly with the profile of a physician
who felt threatened by a patient's access to medical information.

Perhaps this anecdote illustrates the fact that the real issue here
is not information, but control. Knowledge is power. Are anti-e-medicine
physicians afraid of losing power and control over their patients?

Most doctors I meet are polite recipients of articles I have obtained
on-line or elsewhere. Several have given me their e-mail addresses. I
have even developed a few supportive relationships with physicians around
the world and look forward to more of the same, not because I am a former
professor and thus a peer of sorts, but because I am a patient. And a
patient is always her own best advocate. Her physicians should be
collaborators in providing her with quality care, and she should not be
afraid to bring new information (albeit diplomatically, one hopes) to
their attention.

Competing interests:
None declared

Competing interests: No competing interests

25 May 2004
Phylis Dryden
disabled college professor
Annville, PA 17003