Online vasectomy
information & mis-information
|
This article is split into
two sections. In the first section we discuss the
widespread problem of online health mis-information, and
some of the initiatives being used to combat the problem.
In the second section we have a few hints and tips that may
help you whilst surfing the net for medical & vasectomy
information. This site is a member of the Health On the Net
foundation - click the opposite link to verify this, and
get more information about the HON Foundation. We strongly
support any initiatives that promote better quality of
medical information on the internet.
|
Health information on the
web
One of the beauties of the web is that it
can cost nothing to have an effective presence in cyberspace. A
website can be crafted easily using utilities that come with your
computers operating system, and there are plenty of ISP's out
there that will host your site for free. Even the tools to
promote it, and analyse site traffic are free! The main
investment is time. We've all come across websites that are put
online in this way, and some of them are as good, if not better
than many commercial organisations whose sites cost many
thousands to put online.
There are always two sides to a
coin, and the flip side of the benefit of this immense amount of
free, high quality information is the problem of websites
purporting to offer you quality medical information, yet actually
supplying information that varies from plain bad, to life
endangering. Many of these sites are technically very good, and
the content is cleverly constructed for maximum persuasion for
whatever cause/motivation lies behind the reason the site is
there. I've yet to see a website on the topic of vasectomy that
comes into the category of life threatening, but there are a few
around who supply information that is - shall we say - rather
slanted.
Everybody accepts that the
internet can't be regulated, but the pressure is hotting up to
distinguish between those websites that are genuine and those
that are not. Defining guidelines for web based health
information on the internet is difficult. The information 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 care givers may want simple explanations and reassurance,
whereas health care professionals may want data from clinical
trials.
Over the past few years, the
issue of poor quality & misleading health information on the
web has become an issue, and there have been quite a few studies
done into the quality of information available. In 1997 Gagliardi
and Jadad5 looked at various methodologies for
measuring health care quality on the internet. They identified 47
different ones. In 2002 they revisited the study, and updated
it6. They found another 51 all of them unvalidated.
One comment made in the BMJ was that "Generating yet more
unproved methodologies looks like another activity that
researchers could usefully stop". However, the proliferation
of tools for assessing quality continued, fuelled by anxieties
about patient harm. The current situation is that many countries
are trying to develop national quality initiatives. This should
hopefully slim down the number of quality control initiatives in
use.
Another early study was
published in 2000 by Impicciatore and colleagues4. It
reviewed website advice on managing fever in children and
concluded that it varied widely in terms of accuracy,
completeness, and consistency. It concluded "As the results of
this study show, a parent navigating the Internet for information
on the home management of cough in children will no doubt find
incorrect advice among the search results."
The BMJ has a series of
interesting articles about how we research the internet for
medical information. in "Commentary: measuring quality and impact
of the world wide web"1 published in 1997, the author
discusses how to evaluate the content, function and impact of a
website. He concludes that "unless we evaluate the quality of
clinical sites and their effects on users, we risk drowning in a
sea of poor quality information. Improved technology is not the
answer to making better use of this enticing resource. We need to
be clearer about the web's clinical role and the evaluation
problems that it raises–how to recruit suitable
subjects, develop valid and reliable methods of measurement, and
carry out many more rigorous evaluations".
"How do consumers search
for and appraise health information on the world wide
web?2 is also published in the BMJ. It set up some
focus groups, gave them a series of medical questions and
observed how they went about searching for the information. The
researchers then questioned the individuals in the focus groups.
Some of the key findings are:-
- Although the search technique was
often suboptimal, internet users successfully found health
information to answer questions in an average of 5 minutes 42
seconds per question.
- Participants said that when assessing the credibility of a
website they primarily looked for the source, a professional
design, a scientific or official touch, language, and ease of
use. However, no participants checked any "about us" sections
of websites, disclaimers, or disclosure statements.
- In the post-search interviews, it emerged that very few
participants had noticed and remembered which websites they had
retrieved information from.
- Users of the internet explore only the first few links on
general search engines when seeking health information.
The focus groups came out
with a few interesting comments:-
- "To me, the text shouldn't use too
much professional terminology. It should appear in a language a
medical lay person can understand without great difficulties".
"The text should be in a respectable and comprehensible
diction, not too sensational."
- "If a trustworthy site provides links to other sites, I
assume they are trustworthy as well"
- "Perhaps a picture of the owner of the site would be
helpful. It would be a plus if the site owner would have a
pleasing face or appears likeable". "I think it is the first
impression. If there is a picture of a honestly smiling man,
that would be very important".
It's an interesting article and worth reading!
Initiatives:-
A review of
internet health information quality initiatives by Risk, Joan
Dzenowagis3 was published in 2001 provides the most
detailed information on worldwide initiatives, and is highly
recommended reading. A brief outline of some of the initiatives
is listed below.
|
WHO
|
The World health
Organisation has called for a health domain name to help
consumers. The California based body that oversees the
creation of "top level" internet domains such as .com and
.org is coming under renewed pressure to agree a new domain
that would signal legitimate health information
websites.
|
|
Quackwatch
|
The problem of quack
websites sites caused the Quackwatch
project to come into being. Basically, Quackwatch is
the name of the project of a group of medical organisations
and individuals who offer advice on how to spot websites
that are medically bad for you, explain why they are
medically unsound and even "Names and shames" the
worst.
|
|
USA
|
In the United States, no
federal or state laws regulate the content of health
websites on the internet. But guidelines drawn up by
certain groups of health care experts try to ensure the
integrity of health information on the internet. The most
prominent of the expert groups are the Internet Health
Coalition and the American Accreditation Health care
Commission (URAC).
The general URAC
guidelines are focused towards clear distinctions between
advertising and health information content, and clear
disclosure of "Significant relationships between commercial
sponsors and health information content".
|
|
UK
|
The government has set up
the new "national knowledge service" to integrate health
information on existing websites and to ensure that it is
consistent and of high quality. This follows a report that
recommended that the public should receive guidance on
which sources of information about health and health care
on the internet were reliable and of good quality. The
report also recommended that a kite marking system should
be developed.
Although NHS Direct Online
has monitored non- government websites linked to its site
in the past and is currently developing a rating system,
this is the only government kite marking of any kind so far
and even that is in its earliest stages.
|
|
The Netherlands
|
One Dutch answer to
ensuring reliable health information on the internet has
been to develop a thorough system of self certification.
TNO Health Trust, part of the large government funded
technical research body launched its internet "trust mark"
spring 2002.
The trust mark is based on
a quality management system called QMIC (Quality for
Medical Information, Communication, and Transaction). Any
organisation must first prove itself capable of meeting a
range of essential requirements before its website can
display a trust mark as a guarantee of safety. If clicked,
it discloses information on the site's certification.
Any organisation applying
for a trust mark must show that it is capable of continuous
self certification. In cardiology, for example, it must
provide an independent cardiologist to offer an external
review of the website.
|
|
Germany
|
Three major initiatives.
Firstly the Federal Ministry of Health has set up set up
the Health Information System Action Forum AFGIS. The forum is to develop
criteria and instruments for the judgment of health
information quality and to point out risks and weaknesses
of available home pages. It's open to all organisations
concerned with health information and committed to its
quality. Afgis has published criteria that require total
transparency on the entire background of health
information, such as on sponsors, authors, and sources.
Secondly, the German
doctors' self governing bodies have a joint initiative -
the Central Agency for Quality Assurance (ZÄQ).
ZÄQ has
published a review on available patient information.
Thirdly, Medcertain
(MedPICS Certification and Trustworthy and Assessed Health
Information on the Net), is being developed in the
department of clinical social medicine at the University of
Heidelberg in collaboration with the University of Bristol
and the Finnish Office for Health Technology Assessment. It
is funded by the European Union and is trying to establish
a trust mark and a meta-data scheme for evaluated health
information. Its aim is to empower internet users to
appraise and select information that has been assessed by
an independent third party.
|
Tips for web
searching
What follows is a brief exploration of
commonly used persuasion techniques by websites (not exclusively
vasectomy sites), and a few things you may care to think about
whilst surfing.
Doctor's sites
These need clarification separately. These
days every business or service is expected to have a website, and
doctors are no exception. Most medical practices will have a
website, and these are basically a shop window for the services
they provide. Some will provide additional information other than
the usual practice information of phone numbers, contacts,
location, opening times, services offered etc. I have seen one
practice that publishes an audit of post-procedure complications,
another that has a sense of humour much akin to my own, some that
provide links to support groups and independent information
sites.
What are they promoting or
selling?
This is of course the major thing that
slants a website's content. It is also the reason that many
techniques of persuasion are employed by any site that has
something to sell (directly or indirectly). This is true of all
websites and not exclusively vasectomy ones. If a site has
something to sell, then it follows that the site content will be
geared towards that end, with anything contradictory swept neatly
under the carpet!
Another interesting site all
about statistics is www.stats.org. It discusses
statistics in general, and how they are used by the media in
particular. I like this one, because in addition to being
extremely informative, it's also a touch cynical.
Mark Twain once said "There are
lies, damned lies and statistics". The sentiment here is
certainly true of the way medical information is used on the web.
When reading articles that use quotations, how often do we bother
to read the full article the quotation comes from? Let's be
honest here - virtually never. We all have a tendency to trust
that the author has made sure that quotations used are correct,
and in the context of the published work it comes from. Believe
me, those using medical quotations are only too well aware of our
trust and have an awful habit of betraying it on a horrifyingly
regular basis. Just changing one word of a quotation can give it
a totally different meaning. The three most commonly used
techniques are:-
- Not using the author of the report/studys original summary
or abstract. The people who write medical surveys and studies
always compile a summary of the report that tells you in a
nutshell what the report is about, how it was conducted and the
major findings. Authors of articles that use quotations do have
this habit of ignoring the report they are quoting from's
abstract and writing their own - oddly enough with a few
changes that make meanings totally different.
- Not quoting correctly. It's quite common to find medical
quotations that don't match the original. Maybe only one or two
words have changed, but often that is enough to change the
meaning totally.
- Quoting out of context. Again, this is quite common. The
words quoted are totally true to the original, yet the sentence
(and it always IS a sentence!!) has been used in such a way
that it seems to say something different. Whole paragraphs are
rather more difficult to misconstrue in this way, and oddly
enough this simply doesn't happen!
So how can you be sure that an
article is using it's research material correctly?
To be honest, although the
articles the quotations come from are usually available online,
ploughing through them word for word to compare two versions is a
bit tedious to say the least.
I've read through a fair few
surveys and studies, but my investigative instincts are usually
aroused in the first place by over-use of medical quotations -
especially "Quick quotes". If a website uses the entire abstract,
or even better links to the original then I tend to give them the
benefit of the doubt. If a website or article just quotes the odd
sentence (and LOTS of them) then I go looking. Clearly the
message or product the site is about has a bearing here too.
My technique is to search on
Medline. Medline is the online catalogue of the National Library
of Medicine, which has many thousands of medical papers available
online - including translations of papers written outside the USA
and in languages other than English. This way you can usually
read the author's abstract, and in some cases the whole document
online. Even papers going back to the time I was born are
catalogued, with more and more coming on line all the time. To
use Medline, type a search string in, and click
the "Search" button.
A search on Medline does reveal
a couple of things that you simply can't get elsewhere - even if
you don't dip into the results of the search.
- A guide to what is being researched in any particular
medical field currently. The search results are displayed in
date order (most recent at the top).
- The waxing and waning of medical fashions. Do a search on a
topic, and page through the results. For example do a search on
"vasectomy + prostate cancer" and you will see a peak of
activity in the early 1980's. The same applies to much of the
hormonal research - peaked about the same time.
- The all important research conclusions. You can usually get
the feel of the medical consensus of an issue from the search
results, but by dipping into the search results you get taken
to the authors abstract. These abstracts give you the major
findings of the research in a couple of paragraphs. If the
report is available online you can jump to the full report.
Some are subscription only, but the abstract is free.
References:-
1 Commentary: measuring quality and impact of
the world wide web. Jeremy C Wyatt, BMJ 1997
2 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, Christian Köhler, BMJ 2002
3 Review Of
Internet Health Information Quality Initiatives. Ahmad Risk, Joan
Dzenowagis, Journal of Medical Internet research 2001
4 Parents on the web: risks for quality
management of cough in children. Pandolfini C, Impicciatore P,
Bonati M. Pediatrics. 2000
5 Rating health information on the Internet:
navigating to knowledge or to Babel? Jadad AR, Gagliardi A. JAMA.
1998
6 Examination of instruments used to rate
quality of health information on the internet: chronicle of a
voyage with an unclear destination. Gagliardi A, Jadad AR. BMJ.
2002