http://bmj.com/cgi/content/full/324/7337/557
BMJ 2002;324:557-558 ( 9 March )
Editorials
The quality of health information on the internet
As for any other medium it varies widely; regulation is
not the answer
This week's theme issue attempts to provide a framework for thinking about
the quality of health information on the internet
a
source of anxiety almost since its first appearance.
Five years ago Impicciatore and colleagues reviewed website advice on
managing fever in children and concluded that it varied widely in
terms of accuracy, completeness, and consistency.1
Pick any medical problem today, and the chances are you'll find
the same. With at least 80 studies reporting similar findings (G
Eysenbach, personal communication), we need no more convincing that
the quality of information on the web varies as widely as it does in
other media.
In 1997 Gagliardi and Jadad identified 47 instruments for measuring
healthcare quality on the internet. Four years later, they found
another 51
all of them
unvalidated (p 569).2
Generating yet more unproved instruments looks like another activity
that researchers could usefully stop. However, the proliferation of
tools for assessing quality continues unabated, fuelled by anxieties
about patient harm. As our international roundup shows (pp 566-7),
countries now seem poised to get in on the act, although little
beyond urban myths exists to justify the level of their concerns.3
Health information on the internet ranges from personal accounts of illnesses
and patient discussion groups to peer reviewed journal articles and
clinical decision support tools. Defining a single quality standard
for such a disparate collection of resources is challenging.
Furthermore, different users may have different criteria for quality.
Patients and caregivers may want simple explanations and reassurance,
whereas healthcare professionals may want data from clinical
trials.
Criteria for determining quality can be organised by their applicability to
various dimensions of online health information, such as content,
type, and intended audience. For standards pertaining only to content
we can use traditional metrics, such as the levels of evidence and
strength of recommendations.4 The type of
information also affects which measures are applicable. Medical
knowledge can be evaluated by scientific standards, whereas literary
or journalistic criteria may be more appropriate for personal
narratives. And the intended audience influences the measures of
quality that are applicable to a particular type of content. Consumer
health information should be written at a comprehensible reading
level; often patients want pragmatic information, such as how long
their illness will prevent them from working, before scientific
details.5
Shepperd and Charnock argue against "exceptionalism" for medical information
on the internet and support standards of quality that apply across
media (p 556).6
While this approach may be appropriate for many aspects of electronic
health resources, some features warrant special consideration. The
interface to online information can be distinguished from the
content, and the criteria for quality of an interface depend on the
communication technology used. Principles for good web design differ
from those for creation of high quality handheld applications.
Furthermore, our concepts of quality change as the technology
evolves. Nielsen's top 10 mistakes in web design remain relevant
today (box),7 but their
implications for usability have changed over time.8
Patients who seek online health information may have a variety
of physical impairments, and it is important to develop resources
that are usable by individuals with disabilities. The Web Accessibility
Initiative provides guidelines for assuring broad accessibility
to internet based information.9
| Jakob Nielsen's top
10 mistakes in web design (1996)7
(1) Using frames
(2) Gratuitous use of bleeding edge technology
(3) Scrolling text, marquees, and constantly running animations
(4) Complex URLs
(5) Orphan pages
(6) Long scrolling pages
(7) Lack of navigation support
(8) Non-standard link colours
(9) Outdated information
(10) Overly long download times |
Ethical considerations are also important in considering the quality of an
online resource. Early codes of conduct focused on honesty and
disclosure. As websites have become increasingly interactive
recording
and storing information about patients and professional users
issues
of privacy and security have become important components of rating
systems.
In the final analysis, however, quality, like beauty, is in the eye of the
beholder, and it is users' views we should be seeking. Many rating
systems use surrogates for quality that do not identify sites that
meet the needs of users. For example, assessing breast cancer sites,
Meric and colleagues found that popularity did not correlate with
traditional standards of quality (p 577).10
Eysenbach and Köhler observed that consumers are finding the correct
answers to medical questions without looking for seals of approval (p
573).11 Ferguson describes the evolution from
passive patients to empowered endusers who are active participants in
their health care through interactions with internet-based resources
(p 555).12
Ultimately, it seems likely that the market will decide.
If healthcare information on the internet is already achieving such desirable
outcomes, why is so much effort still being expended on defining,
mandating, and regulating quality? A historical perspective may be
instructive. Comparing the social effects of the telegraph and the
internet, Tom Standage wrote that given a new invention, optimists
see only its potential for good, while pessimists see only its
potential for harm. "The hype, skepticism, and bewilderment
associated with the Internet . . . are direct consequences of human
nature, rather than technology."13
While the telegraph spawned new laws to minimise its potential harms, new
practices evolved that largely circumvented them (human nature,
again). Failing to fulfil either the extreme hopes or fears held out
for it, the telegraph eventually settled into a useful role in
communication, before being rendered obsolete by newer technologies
such as the telephone.
Regulation does not seem like the right strategy for improving the quality of
health information on the internet. Other approaches, such as
educating the producers of this content, look like a better long term
bet. However, such initiatives should not hinder the evolution of
communities, resources, and processes that are improving healthcare
outcomes.
Gretchen P Purcell, assistant research professor.
Surgery and Clinical Informatics, Duke University Medical Center, Durham,
North Carolina 27710, USA (purcell@duke.edu)
Petra Wilson, scientific officer.
Directorate General for the Information Society (Applications relating to
Health), European Commission, 1049 Brussels, Belgium (petra.wilson@cec.eu.int)
Tony Delamothe, web editor, bmj.com.
tdelamothe@bmj.com
Footnotes
GPP is a consultant to Unbound Medicine. PW's opinions do not necessarily
reflect the position of the European Commission.
| 1. |
Impicciatore P, Pandolfini C, Casella N, Bonati M.
Reliability of health information for the public on the world wide web:
systematic survey of advice on managing fever in children at home. BMJ
1997; 314: 1875-1879[Abstract/Full
Text].
|
| 2. |
Gagliardi A, Jadad AR. Examination of instruments used to
rate quality of health information on the internet: chronicle of a voyage
with an unclear destination. BMJ 2002; 324: 569-573[Abstract/Full
Text].
|
| 3. |
Smith R. Almost no evidence exists that the internet harms
health. BMJ 2001; 323: 651.
|
| 4. |
Oxford Center for Evidence-based Medicine. Levels of
evidence and grades of recommendations. , 2001.
http://cebm.jr2.ox.ac.uk/docs/levels.html (accessed February 2002). |
| 5. |
Forsythe DE. Using ethnography to build a working
system: rethinking basic design assumptions. New York: McGraw Hill,
1992:505-509. |
| 6. |
Shepperd S, Charnock D. Against internet exceptionalism.
BMJ 2002; 324: 556-557[Full
Text].
|
| 7. |
Nielsen J. Top ten mistakes in web design (1996)
Available at:
www.useit.com/alertbox/9605.html (accessed February 2002). |
| 8. |
Nielsen J. "Top ten mistakes" revisited three years
later. (1999). Available at
www.useit.com/alertbox/990502.html (accessed February 2002). |
| 9. |
W3C. Web accessibility initiative (WAI), 2002. www.w3.org/WAI/
(accessed February 2002). |
| 10. |
Meric F, Bernstam EV, Mirza NQ, Hunt KK, Ames FC, Ross MI,
et al. Breast cancer on the world wide web: cross sectional survey of
quality of information and popularity of websites. BMJ 2002; 324:
577-581[Abstract/Full
Text].
|
| 11. |
Eysenbach G, Köhler C. How do consumers search for and
appraise health information on the world wide web? Qualitative study using
focus groups, usability tests, and in-depth interviews. BMJ 2002;
324: 573-577[Abstract/Full
Text].
|
| 12. |
Ferguson T. From patients to end users. BMJ 2002;
324: 555-556[Full
Text].
|
| 13. |
Standage T. The Victorian internet. New York:
Berkley, 1999. |
© BMJ 2002
Rapid Response responses to this article:
Read all Rapid Response
responses
- A significant number of users are confused by medical information
provided over the internet.
- Chinmay M Gupte, et al.
- bmj.com, 11 Mar 2002
[Response]
Related editorials in BMJ:
- From patients to end users .
- Tom Ferguson
BMJ 2002 324: 555-556.
[Full text]
[extra:
Guidelines for patients]
- Against internet exceptionalism .
- Sasha Shepperd and Deborah Charnock
BMJ 2002 324: 556-557.
[Full text]
Other related articles in BMJ:
- PAPERS
Examination of instruments used to rate quality of health information
on the internet: chronicle of a voyage with an unclear destination.
- Anna Gagliardi and Alejandro R Jadad
BMJ 2002 324: 569-573.
[Abstract]
[Full text]
- PAPERS
How do consumers search for and appraise health information on the
world wide web? Qualitative study using focus groups, usability tests, and
in-depth interviews.
- Gunther Eysenbach and Christian Köhler
BMJ 2002 324: 573-577.
[Abstract]
[Full text]
- PAPERS
Breast cancer on the world wide web: cross sectional survey of quality
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- Funda Meric, Elmer V Bernstam, Nadeem Q Mirza, Kelly K Hunt, Frederick C
Ames, Merrick I Ross, Henry M Kuerer, Raphael E Pollock, Mark A Musen, and S
Eva Singletary
BMJ 2002 324: 577-581.
[Abstract]
[Full text]
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