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
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Ferguson et al describe a new generation of e-patients1. Whilst
there is concern as to whether this is a good or bad thing for patients,
it is likely to happen despite doctors and not in spite of them! Health
professionals need to be alert to the fact that patients utilize the
Internet and should facilitate those that do not, as each highlight
specific issues about this widely available resource.
In February 2002, we conducted a survey of Internet use for
healthcare purposes in our outpatient HIV positive cohort. Over a three-
week period an anonymous self-completion questionnaire was offered to
patients attending the HIV outpatient clinic .67% (183/273) of patients
responded. 42% used the Internet to obtain HIV/AIDS information. Use was
not associated with age, gender or employment status. Reported benefits of
the Internet showed that information available was more detailed and
comprehensive. Furthermore the majority of patients felt they needed more
time to gain this information than the clinic provided and 28% preferred
to seek certain information anonymously. However, the majority of
respondents (78%) felt that the information obtained was more difficult to
understand. Use of Internet was not just confined to medical treatments
but many patients wanted to gain more information on complementary
therapies (48%), support groups (38%) and social services (30%).
29% patients did not own a computer and 21% did not know how to access
information on line
With ever more demands being placed on doctors time and increasing
patient expectations, the Internet should be welcomed as an additional
tool in the management of patients with chronic diseases. We feel that
the above results highlight the need for doctors to recognize that many
patients already benefit from using the Internet. Furthermore, they use it
to obtain a wide variety of medical and non-medical information that is
helpful to them which is best provided by means other than the doctor. The
internet allows patients more time to digest information, and get
answers to questions not addressed at their medical consultation due to
lack of time or embarrassment.
Clinic based computer terminals and free training sessions, which
introduce novice computer users to the Internet, can help in overcoming
the disparities in Internet use and assist all concerned with evaluating
the quality of information available and reaping the benefits of this
valuable resource.
References:
1. Tom Ferguson and Gilles Frydman. The first generation of e- patients.
BMJ 2004; 328: 1148-1149
Competing interests:
None declared
Competing interests: No competing interests
I am one of numerous world-wide sufferers of an unusual,
spinal condition. While some cases may be congenital, many
'acquire' it after trauma, in my case after a high-velocity car smash.
We belong to Support Group YahooGroup 'TarlovTalk' at
www.tarlovcyst.net, trying to resolve a nasty
affliction that doctors world-wide dismiss out-of-hand.
This is an amazing co-operative effort.
The Lancet editorial: ‘Sacral cysts and perineal pain? 9-11-91 page
1180 refers to this still ambiguous and unresolved health problem, that
though not life-threatening, destroys lives.
Competing interests:
None declared
Competing interests: No competing interests
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
If indeed the kingdom of heaven is within us surely our
basic needs for guidance and care can be borne substantially
by common people. Literate vanities and professional
nomenclatures do not create or breathe the wealth of
experience, kindness and common cause interested persons can
share on-line. What's been so long missing in industrial
healthcare becomes possible in important ways
electronically. The buggy whip makers surely scorned the
'unsafe' mechanical vehicles.
Dr. Ferguson has given this matter long positive thought and
consideration and I'm happy to see BMJ open it's pages to
these topics and principles of healthcare participation.
Competing interests:
None declared
Competing interests: No competing interests
At risk of being thought one of those "distracted by focusing on the
negative aspects of the internet," may I report that in studies of
internet use by consecutive neurology outpatient referrals prior to
consultation, in the setting of two district general hospitals in north-
west England in the first quarters of 2001-2004, of a total of 854 new
patients seen, 335 had internet access (39%), 92 had searched the internet
for medical information (11%), of whom 37 (4%, or 40% of searchers) had
accessed material and/or reached conclusions which might be deemed
inappropriate to their final neurological diagnosis.
Whilst not denying the many potential benefits of the internet for e-
patients with established neurological diagnoses,1 these data suggest that
unfocused searching prior to neurological consultation and diagnosis may
not uncommonly be liable to error.
1. Lester J, Prady S, Finegan Y, Hoch D. Learning from e-patients at
Massachusetts General Hospital. BMJ 2004;328:1188-90 (15 May).
Competing interests:
None declared
Competing interests: No competing interests
Sir;
Like in any branch of sciences and humanities, medical sciences have
rightly attempted to pace with the rapid and highly effective developments
in medical health informatics for the benefits of human life. Proper
utilization of health information available at many
e-sites comprising of millions of virtual health communities [1,2] and
others is extremely vital to e-patients, who can have rapid lively
discussions and interactions with their quasi-medical colleagues and
medical personnel for their own and others medical benefits. Most relevant
point is that almost all these virtual communities, which provide free
access to the e-audiences including patients, patients organizations,
doctors and paramedical workers are under the supervision of and managed
by qualified medical health professionals and paramedical colleagues.
Rather this is the beauty of these e-patients sites, which indeed
encourage peer to peer effective and meaningful communications and mutual
multiple advantages including psychosocial supports.
Most importantly, any confusion or misunderstanding arising from such
e-communications, I feel should be referred to only highly qualified
physicians and consultants who are mostly the managing personnel of such e
-patients group sites. Thus, professional consultants are contacted
sparingly and most of the medical, social, psychological, cultural and
other types of help including technological help is provided by patients
colleagues and patients themselves. Partial deprofessionalization is one
of the healthy consequences of e-patients group sites and virtual
communities. We as a medical professional encourage such effective
developments.
The true marital relationships between biopsychosocial and
information technological developments is going to last forever, which
offer tremendous benefits for humans in particular patients and their
carers.
References:
1. Tom Ferguson and Gilles Frydman. The first generation of e-
patients. BMJ 2004; 328: 1148-1149
2. Gunther Eysenbach, John Powell, Marina Englesakis, Carlos Rizo,
and Anita Stern. Health related virtual communities and electronic support
groups: systematic review of the effects of online peer to peer
interactions. BMJ 2004 328: 1166-0.
Competing interests:
Supporter of e-patients communities and groups
Competing interests: No competing interests
I agree with the authors about the various 'types' of
e-patients. From current practice, two types of patients
emerge: those e-literate and those who dont have access to
a computer and/or if they did, would not have the
necessary resources to conduct a search. The other
a-priori about e-literate patients one should beware of is
that they are able to critically appraise or fully
understand the information on the screen.
Simply put, the pc has now become the item that
dichotomises the 'haves' and the 'have-nots'.
Competing interests:
None declared
Competing interests: No competing interests
... and the first generation of e-medical students
We read with great interest the editorial of T Ferguson and G Frydman
on the emergence of the first generation of e-patients in the developed
countries (1). It is interesting to note that a similar phenomenon is
occurring at the same time, as regards the progressive acquisition of e-
learning by undergraduate medical students.
Since 1993, the Rouen University Faculty of Medicine has implemented
the problem-based learning (PBL) curriculum for second and third year
students. The "vital distress syndrome" (VDS) PBL is taught in the second-
year of the medical curriculum (students between 19-21 years old). During
VSD PBL tutorials, a student evaluation questionnaire was used to
routinely collected information on teaching resources, self-reported
utilisation and the site of Internet access (i.e. home). Moreover, we
compared our results with the National Survey for Internet connection,
regularly conducted since 2000 in the general population in France
(permanent survey of living standards) (2). The same year students ranged
between 98 in 2000 and 135 students in 2004.
In 2000, 14.0% of the students, 15.8% in 2001, 12.2% in 2002, 12.7%
in 2003 and 32.0% in 2004 used teaching resources on Internet for VDS PBL
curriculum. Among these, 4.8% in 2000, 7.7% in 2001, 7.2% in 2002 and 9.4%
in 2003 indicated that they had access to web at home. By comparison, 12%
in 2000, 18% in 2001, 23% in 2002 and 28% in 2003 of the French general
population was connected to Internet at home (2).
Between 2000 and 2003, we observed a stabilisation of Internet
utilisation as a tool to support medical learning by the students, with a
major increase in use this year. This tendency should be confirmed in the
next few years, nevertheless there is an indication that routine use of
the Internet in successive cohorts of young medical students in France is
expected to expand. A linear and parallel progression of access to
Internet at home in the medical and in the French general population has
been observed, with the possibility of health access on the net for
patients (1). Our preliminary findings should encourage university
departments to train and to guide students to use Internet resources more
effectively. Further investigation is required to assess the impact of the
web learning in undergraduate medical students.
References:
1 - T Ferguson, G Frydman. The first generation of e-patients. BMJ 2004;
328: 1148-1149.
2 - INSEE. Measuring the growth in mobile telephone service and
access to Internet. INSEE première, May 2004.
http://www.insee.fr/fr/ffc/ficdoc_frame.asp?doc_id=1266&analyse=1&path=/...
(acceded 2004, May 26)
Competing interests:
None declared
Competing interests: No competing interests