Telehealth: WEB SITES AND THEIR SCIENTIFIC BOARDS
TRUSTED SOURCES OR PAID SPRUIKERS!
by: Les Posen, Ph. D. 03/20/01
At last year's very successful Victorian Branch Annual Conference, the
organizing committee invited me to offer a seminar on Depression (the
conference's theme) and the Internet.
I divided my presentation into three sections: Does the Internet cause
depression, an old favorite of journalists; second, is it possible for
psychologists to engage in the ethical treatment of depression using the
Internet; and third, what is the quality of information available to the
consumer and practitioner alike on the Internet?
A few months after the talk I was very pleased to receive official APS
feedback that essentially said the audience believed the seminar was well
worth attending. Just as rewarding were comments that the APS should be
running more seminars like it, leading me to believe that many psychologists
were hungry for information they could digest in organized, easy to understand,
well-illustrated chunks (from humble sources!).
I intend to place some of that talk on the Web when the Victorian Branch
homepage is up very soon, and as the webmaster of the site, I have asked
our website developers to construct the site so I can post papers from
future conferences and other PD activities (see previous issue of InPsych).
What seemed of most interest to those attending the seminar was my "tour"
of a variety of sites offering information about Depression which they,
and presumably their clients, could read. Indeed, I began my talk by suggesting
that "depression" was one of the most widely used search engine terms,
second only to "sex", and that healthsites may be the only other websites
after sexsites to actually make a profit for their owners, the poor fortunes
of WebMD notwithstanding.
Now as high-tech as I am, my talk was considerably low-tech, given that
I am also a pragmatist and an occasional follower of Murphy, all of which
means I used overhead slides to illustrate my talk, rather than attempt
a "live" Internet connection or the use of Microsoft's ubiquitous Powerpoint
application. (By the way, if anyone knows how to import whole Explorer
or Navigator webpages into Powerpoint, please let me know!)
Bearing in mind that most of the problems of living seen by practicing
psychologists (e.g. anxiety, relationship problems, stress, etc.) will
be described on the Web in a similar fashion, it's easy to construct several
categories of website devoted to the example of Depression. To some extent,
the quality and accuracy of the information I found varied more across
the categories than within.
The categories are:
- Personal (Vanity) webpages, categorized by stories
of a personal anecdotal nature written and composed by sufferers, "survivors"
or their families. These sites often contain outcomes which are very
personal in nature, and not necessarily accurately reflect how professionals
view depression. Often, they contain unflattering descriptions of the
professionals' failure to help, other times they laud individual practitioners
or techniques uncritically. Yet excellent examples of self-help literature
and state-of-the art summaries can also be found on some pages.
- Self-help groups, who have graduated from discussion
lists, to develop their own resource pages where information, chat rooms,
and references can be viewed or downloaded.
- Official organizations, often composed of sufferers
and their families, similar to self-help groups, but far more organized,
already publishing print-based journals or periodicals, and often with
a high-powered Advisory Board composed of academics and professionals,
such as MDs, psychologists or social workers.
- Professional groups, such as the APS, APA, BPS, etc.
who have a vested interest in providing accurate information to the
consumer and their members. Such sites often carry original research
papers or state-of-the-art summaries, as well as links to literature
searches such as Psychinfo, Medline, ERIC, etc.
- Magazine-style websites, often edited by professional
journalists with science backgrounds who provide articles to professionals
and health consumer alike, and whose fees are paid for by advertisements.
In recent times, this category has split into sites offering information
to consumers, and sites where professionals can be updated on a weekly
basis with news of conferences, publications, books, and articles. These
latter sites often require a password to access, and carry professionally-oriented
advertising content.
- Individual and group professional websites, descriptive
of a practice's offerings, and inclusive of information about depression,
such as homework handouts, scholarly papers, question and answer columns,
and occasionally with long lists of links to any or all of the other
sites listed above. Included in this category would be the websites
of academic and research institutions, describing their staff and current
areas of research interest. In the case of depression, pharmaceutical
companies might also be included in this category.
- Government sites, where departments of health, science,
medicine, welfare, and so forth offer consumers guidelines, sources
of contact, official documentation, policy papers, invitations to participate
in policy making, etc.
Almost all the sites listed above can be accessed by consumers, the exception
being those where only credentialed professionals gain admittance by password.
What this means is that probably for the first time, consumers can know
as much as professionals about new developments, outcome studies, controversies
and the like. For the up-to-date professional, this will not present a
problem although I would wager that no professional has the time to review
all the material a client could obtain on the internet. When this happens
in a session ("Hey, did you see the Discovery channel website on new developments
in SSRI medications? Do you think I should give them a try?") perhaps
we ought to be ready with a stock set of answers, consistent with our
treatment orientation.
At the same time, we must be prepared to deal with both inaccurate and
unproven treatments, as well as biases and omissions some sites contain.
In my talk at the Victorian Branch Conference, I showed a number of homepages
of organized national (US-based) self-help groups. These often display
early in search engine pages (e.g. Yahoo, Google, Excite, etc.), and appear
straight-forward and above-board. But what I demonstrated in my talk was
that their stance with regard to certain treatments was questionable.
Despite or because of the constituency of their Advisory Boards, and because
much of their funding comes about via donations from pharmaceutical companies,
psychologically-based treatments for depression were glossed over, and
"depression is a biologically-based disease" was the essential message.
Whereas a reasonable consumer might view a personal homepage with certain
skepticism, I pondered whether the same skepticism would be held for a
large organization of sufferers and their families, supported by an esteemed
Advisory Board of experts. Frankly, Advisory Boards don't hold that much
sway for me any longer, given the links between research and funding.
If you're not sure if grant money supplied from pharmaceutical companies
affects research outcomes, see (1) Science (May 26, 2000) The burden
of baring all; and (2) http://familytherapynetwork.com/feat4.shtml
Curiously, at the same time I was preparing my presentation, others with
an interest in the accuracy of Internet-based information were performing
more scholarly investigations. Perhaps the publication of accuracy levels
of websites in esteemed journals demonstrates that use of the Internet
has come of age - or perhaps it reflects fears harbored by professional
groups: the professions are becoming more territorial as they experience
the incursion into "protected" territory so long held and mythologized
through the use of specialized terms (e.g. DSM-IV), or through restriction
of trade, as enforced by registration bodies. In other words, technological
innovation isn't just breaking down global barriers to trade, information
and cultural exchange, but it is also breaking down access to information
once "owned" by guilds and charged for accordingly, with all the status
and privilege afforded such ownership.
The research I refer to, titled "Quality of web based information on
treatment of depression: cross sectional survey" was published in the
British Medical Journal in December, 2000.Its URL is: http://bmj.com/cgi/content/full/321/7275/1511,
where you will also find a URL for downloading the entire article as a
pdf file. (If the URL has changed by the time you read this, please email
me and I will forward you the file.)
Written by Kathy Griffiths and Helen Christenson, Visiting Fellows at
the Centre for Mental Health Research at ANU, Canberra, their article
reviewed 21 popular Web sites about depression. Griffiths and Christenson
in fact extended some of the original work of Silberg Lundberg and Musacchio
which had been published in the Journal of the American Medical Association
(JAMA) in 1997. Silberg et. al had sought to form some kind of replicable
and reliable criteria for examining websites. This original research has
become a little famous on the Internet for the following sentence: "when
it comes to medical information, the Internet too often resembles a cocktail
conversation rather than a tool for effective health care communication
and decision making." (The full citation is: Silberg WM, Lundberg GD,
Musacchio RA. Assessing, controlling and assuring the quality of medical
information on the Internet. JAMA, 1997;277:1244-5.)
Indeed, Silberg et. al's article generated much discussion, not just
in medicine, but in law http://elj.warwick.ac.uk/jilt/00-1/robinson.shtml,
dietetics http://navigator.tufts.edu/ratings.shtml
and other professions coming to grips with how "their" information was
presented on the net. Essentially, Silberg et. al argued that when examining
the integrity and utility of a website, four criteria must be kept in
mind:
- Authorship: Authors and contributors, their affiliations,
and relevant credentials should be provided;
- Attribution: References and sources for all content
should be listed clearly, and all relevant copyright information noted;
- Disclosure: Web site 'ownership' should be prominently
and fully disclosed, as should any sponsorship, advertising, underwriting,
commercial funding arrangements or support, or potential conflicts of
interest. This includes arrangements in which links to other sites are
posted as a result of financial considerations. Similar standards should
hold in discussion forums;
- Currency: Dates that content was posted and updated
should be indicated.
True enough words, and for those readers contemplating designing their
own websites, Silberg's article and those that cite it, are must-reads.
But a closer look at the Silberg criteria reveal little in the way of
knowing the quality or validity of a webpage's content, as Griffiths and
Christenson point out in their article. Indeed, they state that "no published
studies have systematically evaluated the quality of mental health websites."
The assumption has been that if a site conforms to the Silberg criteria
there is a high probability that its content is meritorious.
To rectify this situation, Griffiths and Christenson surveyed websites
that a "typical" user might access for information about depression.
Acting as typical users, they used two search engines, DirectHit www.directhit.com
and MetaCrawler www.go2net.com
to conduct searches in March 1999. Frankly, DirectHit was unknown to me,
as I regularly use Google www.Google.com
for all my searches, falling back on other engines if Google is unsatisfactory.
Then I will use my Macintosh's Sherlock program, a "find File" application
built into the system software, which sends search commands to a variety
of search engines simultaneously. Commercial programs of greater flexibility
and power such as Copernic www.copernic.com
also get used often.
MetaCrawler was one of my favorite engines before Google, and was a webpage
based multi-search engine of great utility.
The authors took DirectHits' top 10 sites for Depression, and MetaCawler's
highest-ranked 11 sites, and the combined 21 sites were evaluated for
"characteristics, content, and accountability"
For the purpose of this article, I am interested in the more controversial
criterion of content. Here, the authors looked at the concordance between
site content information and best practice using an American evidence-based
guideline on clinical practice for treating depression published by AHPCR,
the Agency for Health care Policy and Research. This is a document well-known
to researchers, and the full reference is:
Depression Guideline Panel. Depression in primary
care. Vol 2. Treatment of major depression. Maryland: US Department
of Health and Human Services, 1993. (Clinical practice guidelines No 5.
AHCPR Publication No.93-0551.)
Not all psychologists agree that these guidelines are the best to work
with, as they do not recommend psychotherapy as a first line treatment
for severe depression. Griffiths and Christenson in reaching their conclusions,
also judged the sites by other criteria, including "the appropriateness
of site information about important treatment and management issues...such
as the importance of seeking help, discussion of side effects, depression
in young people, and the relation between depression and suicide." This
included whether any drug companies were involved in the site, and if
a professional editorial board existed. The type of interventions recommended,
sources of help recommended, and a very subjective "overall quality of
the site" were also "measured" for the purposes of statistical analysis.
I would urge you to locate the original article to read it in its entirety
because it forms an interesting and useful model for website development,
particularly important as the APS, and its various divisions set about
developing a greater web presence.
Ahead of that, here are my personal highlights of the Griffiths and Christenson
paper (with respesct to content criteria):
- Very few of the 21 websites received high overall ratings for content,
meaning they did not following the AHPCR guidelines.
- Few of the sites were comprehensive, and most contained inaccuracies.
- Most sites mentioned antidepressants and psychotherapy, but were inaccurate
in the specified indications for these treatments:"....almost half the
sites recommended combined use of antidepressants and psychotherapy
as a first line treatment when this is not recommended by the AHCPR
guidelines."
This exposes one of the great myths of depression - that drugs
and therapy work better in tandem than either alone. I challenge
readers to find more than a few published studies of controlled
experiments that suggests "both is best" - it has taken up the role
of professional dogma in our thinking, perhaps to appease our medical
colleagues. But it is not evidence-based, but more wishful thinking,
I would suggest.
- Few sites discussed different approaches to young people versus adults
(e.g., drugs should not be used with young people).
- "Sites were as likely to recommend (other) websites, family members,
the clergy, or friends as they were to recommend psychiatrists."
- The 21 sites surveyed recommended a total of 53 different interventions,
but with little evidence to support their recommendations.
- Sites with an editorial board and sites owned by organizations (as
opposed to individuals) produced higher quality sites than others.
The authors do not actually include the names of the sites they visited,
and research conducted in early 1999 and read two years later may be out
of date, given the growth of the Internet, and increasing sophistication
of search engines.
But their last point, regarding editorial boards and organizations, needs
to be evaluated very carefully, in my opinion. I urge you to read the
Editorial in the Journal of Medical Internet Research (http://www.jmir.org/2000/1/e7/)
where criticism of a very famous commercial health site, that of the former
US Surgeon-General, E. Everett Koop http://www.DrKoop.com,
is cited.
Investigated by the New York Times, it was shown that DrKoop.com published
a list of hospitals designated as "the most innovative across the country,
not revealing that these hospitals actually paid for the listing. Moreover,
the site was criticized for calling advertisers "partners." Additionally,
it was said that DrKoop.com violated medical ethics (the guidelines of
the American Medical Association) by making money referring patients to
other physicians: on the website, DrKoop.com published listings of clinical
trials, receiving a fee paid by the clinical research company (Quintiles)
for each patient "referral" - without revealing this fact."
Koop himself attempted some damage control, using his political skills
to bring together various internet business representatives to convene
a panel to explore health ethics on the net. Others, less trusting of
commercial interests, did likewise, and the Journal of Medical Internet
Research, using no less a location than the World Health Organization
in Washington to convene a working party, has since published a very comprehensive
set of guidelines: e-Health Ethics Initiative. e-Health Ethics Draft Code.
Journal of Medical Internet Research 2000;2(1):e2 http://www.jmir.org/2000/1/e2/
So, let buyer and provider beware. All is not how it seems to be in cyberspace,
and achieving a strong web presence will require adherence to ever increasing
standards of ethical probity and scrutiny. If individuals can be sued
for libel in email and discussion lists, as happened, legal action against
misleading information on the Web cannot be far behind.
Website of the Month:
Not sure how to evaluate a website, or if yours will pass muster? Help
is at hand!
The Health Summit Working Group has developed a tool (IQ tool) to help
you evaluate a site, even your own: http://hitiweb.mitretek.org/iq/
Les Posen, Ph.D., Secretary, Australian Psychological Society, Victorian
Branch.
Snail-mail: P.O. Box 1229, St.Kilda South, AUSTRALIA, 3182
Voice: +61 3 9576 0881
Email: lesposen@optushome.com.au
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