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Shopping around the internet today and tomorrow: towards the millennium of
cybermedicine
"The world wide web is the universe of network-accessible information, the
embodiment of human knowledge" (W3C)
The evolution of the "information age" in medicine is mirrored in the
exponential growth of medical web pages, increasing numbers of
databases accessible on line, and expanding services and publications
available on the internet. The handful of computers linked by the
predecessor of the internet in 1969 has grown to more than
5 million websites today. In spring 1998, the world wide
web had at least 320 million web pages of general content.1
In addition, there are countless conversational areas on the
internet, like chat rooms and newsgroups, where people exchange
messages on tens of thousands of subjects. Somewhere more than
150 million people currently communicate over the internet2
According to the World Wide Web Consortium (W3C), however, the rapid
"hypergrowth" of the web from 1992 to mid-1995 has now somewhat
slowed to roughly gaining an order of magnitude "only" every
30 months.3
Medical information is often said to be one of the most retrieved types of
information on the web. In fact, according to a survey of October
1998, 27% of female and 15% of male internet users say that they
access medical information weekly or daily.4 An interesting observation from this and other surveys5
is that health and medical content seems to be one of only a few categories on line that women are more likely to use than men.
Summary
points
- More than 100 000 medical websites exist, and their number is still
growing rapidly
- "Cybermedicine" is a new academic specialty at the crossroads of medical
informatics and public health, studying applications of the internet and
global networking technologies to medicine and public health, examining
the impact and implications of the internet, and evaluating
opportunities and the challenges for health care
- The internet revolution in health care is largely driven by a massive
consumer demand for online health resources
- The fact that patients have access to the same databases as clinicians
leads to increased consumer knowledge, which is pushing clinicians to
higher quality standards and evidence based medicine
- Patient to patient interchanges are becoming an important part of health
care and redefine the traditional model of preventive medicine and
health promotion
- Problems of cybermedicine include the quality of online information,
lack of standards, and lack of social equity
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No one knows the exact number of medical (including health and "wellness")
websites, but the frequently cited figure of 15 000 health sites5 is
probably an underestimate, given that Yahoo USA alone lists more than
19 000 websites under the topic "health,"6 and
other international Yahoo catalogues together add roughly another
15 000 sites. Assuming conservatively that a maximum of 30% of
all sites are registered in Yahoo,1 we can estimate that there are a minimum of 100 000 health
related websites available. Health information providers on the web
include mostly private companies offering medical products or
medical information (news services, electronic journals, databases),
individual patients and health professionals, self support groups for
patients, and professional associations, non-governmental
organisations, universities, research institutes, and
governmental agencies.
Cybermedicine: a definition
The developments outlined above probably have a considerable impact on
efficiency and quality of future health care, consumer empowerment,
public health, medical education, and several other >issues. At the
crossroads of medical informatics and public health a new academic
specialty is emerging, "cybermedicine" - hat is,
"medicine in cyberspace," where "cyberspace" denotes the internet (fig 1). An arbitrary
definition of this discipline could be "the science of applying
internet and global networking technologies to medicine and public
health, of studying the impact and implications of the internet, and
of evaluating opportunities and the challenges for health care." Of
particular interest in our unit for cybermedicine at the Department
of Clinical Social Medicine in the University of Heidelberg is the
exploration and exploitation of the internet for consumer health
education, patient self support, professional medical education and
research, the evaluation of the quality of medical information on the
internet, the impact of the internet on the patient-physician
relationship and quality of health care, and the use of global
networking for evidence based medicine.

Fig 1 - Definition of cybermedicine
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| Table 1 - Telemedicine versus cybermedicine |
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| Detail |
Telemedicine |
Cybermedicine |
 |
| Geographical coverage |
Local or regional |
Global |
 |
| Application area |
Primarily curative medicine |
Primarily preventive medicine |
 |
| Security |
High security possible |
Security limited |
 |
| Data exchanged |
Clinical data |
Information for patient education and self support, anonymised clinical data for medical education, anonymised epidemiological and public health data |
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| Exchange between |
Patient-physician, physician-physician |
Patient-patient, patient-physician, physician-physician |
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| Aims |
Monitor individual patients, diagnose, and treat |
Prevention (especially primary and tertiary), health promotion, monitor populations, gather epidemiological and other data from patients, use patient feedback and consumer involvement for evidence based medicine |
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| Driven by |
Sometimes technological push |
Mostly consumer pull |
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| Setting |
Controlled setting, limited number of well defined users |
Uncontrolled conditions |
 |
| Evaluation |
Possible |
Impact on populations difficult to measure |
 |
| Reach |
Reaching tens or hundreds |
Reaching millions |
 |
Cybermedicine is distinctive from telemedicine, although there are overlapping issues, especially as the internet can also be used as a medium for telemedical applications. While telemedicine focuses primarily on a restricted exchange of clinical, confidential data with a limited number of participants, for the most part between patient and physician or between physician and physician, in cybermedicine there is a global exchange of open, non-clinical information, mostly between patient and patient, sometimes between patient and physician, and between physician and physician (table 1).
Telemedicine for the most part is applied to diagnostic and curative medicine, while cybermedicine is applied to preventive medicine and public health. The term "prevention" in this context covers not only measures to prevent the occurrence of disease (primary prevention) - for example, by health education on websites set up by professionals or consumers - but also the reduction of the consequences of disease (tertiary prevention) - for example, by information exchange among patients through newsgroups, websites, or via email, leading to improved self management of their diseases. In cybermedicine the new role of the consumer redefines the traditional concept of "prevention" and "health promotion" (that is, the process of enabling people to increase control over the determinants of health and thereby prevent disease or reduce the impact of disease), which traditionally implied a formal communication process between the health professional as sender and the consumer as receiver, whereas on the internet, health promotion and prevention becomes largely a process between consumer and consumer.
Other people may have other definitions of cybermedicine. In his book Cybermedicine: How Computing Empowers Doctors and Patients for Better Health Care, Warner Slack uses this term in a much broader sense, not only focusing on the internet but referring to the use of computers in medicine in general.7 Another article, entitled "Cybermedicine" in the New England Journal of Medicine,8 merely referred to medical advice services on the internet and thus to only one aspect of what we think constitutes cybermedicine.
The role of consumers
While most physicians still lag behind other professions in their use of modern information technology (see, for example, the 1997 American Interactive Healthcare Professionals Survey by FIND/SVP9), in many parts of the industrialised world consumers have taken the lead in adopting new media for retrieving and exchanging health
information. While telemedicine is often driven by a "technological push," cybermedicine is characterised by a remarkable "consumer pull."
We would argue that consumers and patients will have a crucial role in being a major driving force for clinicians to "go on line" as consumers accessing electronic information will inevitably increase the pressure on caregivers to use timely evidence and will force them to become acquainted with information technology. The internet is therefore a motor for evidence based medicine, not only because it provides an infrastructure for health professionals to access resources and databases10 but also because it allows consumers to draw from the same knowledge base, thereby increasing consumer involvement in healthcare decision making and increasing the pressure on caregivers to deliver high quality health services.11 It is mainly the latter aspect that is the true revolution (at
the same time a challenge 12) for health care. While it is still a matter of debate whether the
typical patient can translate these possibilities directly into better health (rather than simply getting lost in a stew of information or becoming a "cyberhypochondriac"), many patients will use this information at least to challenge the evidence base of physicians by confronting them with "anecdotes" from the internet. This is often referred to as being one of the negative sides of medical information on the internet as it puts new strains on the patient-physician relationship, but we can also regard this as a positive incentive for doctors to learn how to use electronic evidence based resources. As physicians follow consumers into the information age this will further increase the demand and the
provision of information on the internet, leading to even more consumer empowerment and patient centred and evidence based medicine - a positive feedback loop (fig 2).

Fig 2 - Positive feedback loop between the information age, consumer empowerment, and evidence based medicine
User demographics
At this point it should be emphasised that according to our own experiences13 considerable differences from country to country exist regarding the ratio of consumers to physicians shopping for medical information, indicating that data from the United States (which are predominant in the literature) must not necessarily be generalised to other countries.
Between July 1998 and February 1999 we conducted a internet based questionnaire survey among the users of our dermatology internet atlas website,14 which was answered by 6441 users from all over the world. (The
advantage of doing such a survey on a medical website that primarily provides images is obviously that language bias can be minimised.) Figure 3 shows the distribution of the 4605 users from the eight countries that had the highest absolute number of users. Among them, Canada has the highest percentage of consumers, closely followed by the United States. In both countries consumers already outweigh healthcare professionals in using an internet resource primarily
intended for medical professionals, contrary to countries such as Spain or Brazil, where users are largely health professionals.

Fig 3 - User profile of dermatology atlas website intended for health professionals
We also observed differences from country to country concerning the relative
proportion of the various health professional groups - for example:
- There was a relatively high proportion of general practitioners (as
opposed to specialists) in Canada, the United Kingdom, and Sweden
as opposed to a relatively high proportion of specialists in
countries such as Germany, France, the United States, Spain, and
Brazil. For Germany, the United States, and the United Kingdom these data correlate well with the actual ratio between specialists and general practitioners in the physician population of these countries15
- There was a relatively high proportion of hospital specialists in Canada,
the United Kingdom, Spain, and Sweden as opposed to the
preponderance of specialists in private practice in the United
States, Germany, France, and Brazil. Again this partly reflects the
actual ratio of specialists in private practice compared with the
public sector in the respective country
- There was a relatively high proportion of nurses in the United States,
Canada, the United Kingdom, and Sweden as opposed to virtually no
information retrieving nurses in other countries, probably
reflecting the differing roles and level of responsibility nurses
have in these countries.
While these data have been collected in the specialty of dermatology and may
be prone to self selection bias and therefore not be representative,
they remind us that there are important differences among countries
in internet use, not only because of technological factors such as
internet access and penetration but also because of differences in
healthcare systems as well as other cultural and sociological factors.
Quality issues and other problems
The quality of information is a critical factor for the use of cybermedicine
for consumer empowerment, patient support, health education, and
evidence based medicine. Pioneering studies that assessed the quality
of websites16 and newsgroups17 or evaluated interactive venues by posing as a fictitious patient 18, 19 all showed that important aspects of quality such as
reliability, accessibility, and completeness of information and
advice found on the internet are extremely variable, ranging from the
useful to the dangerous. While a similar problem is also known from
traditional media such as magazines, newspapers, and television, the
internet adds a new dimension because, firstly, everybody can be a
publisher (often without any quality or editorial control at the
stage of production), secondly, originators of messages and their
credibility are difficult to assess for readers, and, thirdly, the
line between editorial content and advertisements is often blurred.
Organisations such as the Federal Trade Commission (FTC)20
or the US Science Panel on Interactive Health Communication21
have repeatedly warned that much information on the web is misleading
or positively harmful. Surveys also show that most internet users
would like to be able to identify and filter potentially harmful
information more easily.22
At the same time, it has been pointed out that many rating systems on
the web are "incompletely developed instruments."23
But quality issues are not the only problems that have to be solved. Lack of
standards are another concern. While internet protocols led to a
global standardisation of how computers talk to each other,
standardisation on many higher levels (such as medical applications)
still has to be achieved to reach interoperability of medical
internet resources.
The third major challenge is less a technical but more a social issue: How
can we avoid the global health network staying limited to the
industrialised world and not reaching populations and areas that are
most in need of improved health? This problem is not confined to
developing countries, but even if we look at users of the internet in
the "developed world," where the internet is well established, ethnic
minorities are underrepresented and low income as well as poor
education remain real barriers to accessing health and medical
content on line.5
Future developments: towards a universal medical knowledge base
The internet will change radically in the coming millennium. One major
revolution on the web will be a "quantity leap," freeing today's
internet from some of its technical limitations. The next generation
internet (see http://www.ngi.gov/) will
operate at speeds up to a thousand times faster than today. Sight,
sound, and even touch will be integrated through powerful computers,
displays, and networks. Patients will be able to videoconference with
their healthcare providers, security problems will be resolved,
and the internet will increasingly be used for transmitting
clinical data, linked with and integrated into educational resources.
The second revolution will lead to a "quality leap." Up to now, the web has
been primarily used for human to human communication. The vision of
the web, however, goes beyond this - the second
side to the web, yet to emerge, is that of "machine
understandable information."24
If this vision becomes reality in medicine, a part of the web would
evolve into a global medical knowledge base that is browsable and
searchable across languages and continents. Key to this development
is the widespread use of metadata (medPICS/XML/RDF), which means
linking human readable content with standard nomenclature such as the
UMLS (Unified Medical Language System) and other descriptive and
evaluative metainformation, either by authors themselves or by third
parties.25,26 In such a global medical knowledge base, diverse medical internet
applications and resources such as text, images, and retrieval
systems of databases would then be interconnected beyond manual
"linking" - glued together by
middleware and intelligent software agents, helping internet medical
users to navigate in an unbounded information space. Together, these
developments will once again revolutionise discovery and
dissemination of knowledge in medicine.
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| Table 2 - Arbitrary selection of websites that exemplify some aspects of "cybermedicine" |
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| Address |
Details of access |
 |
| |
Access to evidence, evidence based medicine |
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| www.ncbi.nlm.nih.gov/PubMed/ |
Probably the most important address for physicians (and increasingly consumers)
on the web: PubMed, one of NLMs gateways to Medline, features pre-Medline
(bibliographic entries submitted directly from publishers) and links to other
databases such as GENBANK or directly to the publisher's website if the article
is available on line |
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| www.guidelines.gov/ (USA) |
Online accessible databases - many are still pretty much under construction - containing evidence
based clinical practice guidelines - that is, systematically developed statements to assist practitioner and patient decisions about
appropriate health care for specific clinical circumstances |
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| www.show.scot.nhs.uk/sign/home.htm
(Scotland) |
|
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| www.ihs.ox.ac.uk/guidelines/
(UK) |
|
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| www.cma.ca/cpgs/ (Canada) |
|
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| www.leitlinien.de/ (Germany) |
|
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| www.nzgg.org.nz/index.htm (New
Zealand) |
|
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| www.mja.com.au/public/guides/guides.html
(Australia) |
|
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| www.cochrane.org/
(Cochrane
Collaboration) |
|
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| |
Patient-physician exchange |
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mednet.stanford.edu/cgi-bin/medworld/HyperNews/get.cgi/patient.html |
One example of an open online forum where patients and physicians can exchange
experiences |
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| www.cyberdocs.com/ |
Example of a commercial
"cyberdoc" |
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| www.kwikmed.com/ |
A more questionable form of cybermedicine - online prescribing of lifestyle drugs |
 |
| |
Patient-patient exchange |
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| news:alt.support.cancer |
Cancer support newsgroup |
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| webhome.globalserve.net/hidecan/entrance.html |
HIDE Network - website for people with hidradenitis
suppurativa, just one example of self support groups organising themselves on
the web |
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| www.webring.org/ringworld/health/disease.html |
Patients with various diseases, and their families, organise themselves in "web rings" |
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| |
High quality cancer information |
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| www.oncolink.org/ |
University of Pennsylvania Cancer Center Resource |
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| cancernet.nci.nih.gov/ |
Cancernet at US National Cancer Institute (NCI) |
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| |
Low quality cancer information |
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| www.pilhar.com/English/english.htm |
Cancer healer, Geerd Hamer |
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| |
Search tools |
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| www.medmatrix.org/ |
Medical Matrix - an internet catalogue |
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| www.achoo.com/ |
Another medical "catalogue" |
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| www.hon.ch/MedHunt/ |
MedHunt, a search engine |
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| www.mwsearch.com/ |
Medical World Search, another search engine |
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| www.dr-antonius.de |
Dr Antonius, a German search engine for medical information |
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Footnotes
Contributors: GE wrote the paper and developed the main ideas presented here.
ERS added useful thoughts. TLD in chairman of the department of
clinical social medicine and contributed to the Dermatology
Online Atlas.
Competing interests: None declared.
Gunther Eysenbach, researchera,
Eun Ryoung Sa, fellowb,
Thomas L Diepgen, chairmana.
a Unit for Cybermedicine, Department of Clinical Social
Medicine, University of Heidelberg, 69115 Heidelberg, Germany,
b Global Health Network Group, Department of Epidemiology, University of Pittsburgh, Pittsburgh, PA 15260, United States
Correspondence to: G Eysenbach
ey@yi.comm
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