HEAD: Take these two sites, twice a day, with a pinch of salt
(published in Longevity magazine)
BLURB: The Internet has mushroomed into an amazing medical library and powerful self-diagnosis tool, but is also an easy channel for potential misinformation and the modern equivalent of “old wives‟ tales”. Malcolm Stone investigates how best to
navigate this sea of self-help mega-sites, medical encyclopaedias and personal „health
tests‟ to find credible information about your ailment or complaint.
By Malcolm Stone
When it comes to your health, misinformation can be deadly. Take the case of hydrazine sulphate. Numerous web sites profess that this common industrial chemical, found in such products as insecticides and rust-prevention agents, can cure cancer. These claims led one 55-year-old man with cancer of the sinus to forgo conventional medical treatment in favour of this „miracle cure‟. Four-and-a-half months after purchasing the chemical,
which was also used in rocket fuel in World War II, over the Internet and following a regimen published on another website, he was hospitalised with signs of kidney and liver failure and died shortly afterwards.
In spite of worrying cases like this, the Internet has mushroomed into an unparalleled medical library and a remarkable source of health information. While the amount of information available is hard to gauge, estimates range from 40,000 to over 4 million health-related web sites, demand for such information continues to rise. A recent survey conducted by the Pew Internet Project (www.pewinternet.org) suggests that as many as eight out of ten Americans with Internet access use the medium to find health information. “It appears to be a popular activity over here as well,” confirms Dr Danie Pauw, CEO of the South African Health24 (www.health24.com) portal. “We have just gone through
quite a growth spurt and have around 320,000 visitors a month.” The Cancer Association
of South Africa‟s (www.cansa.org.za) Martha Molete cites convenience as one of the main driving forces behind the medium‟s tremendous popularity. “The Internet is
becoming popular because it enables those with access to get basic information on a huge range of topics quickly, anonymously and without having to go out of their offices or homes.”
So what are people looking for?
The latest Pew Internet Project survey reports that searches relating to specific diseases and treatments remain the most common, accounting for around 66% of all investigations conducted online, but that a broader pattern of usage has emerged. “Several years ago the
usual internet health search was for someone in real medical need such as an outbreak of worrisome symptoms or a new medical diagnosis” observes Susannah Fox, the Pew
Project‟s Associate Director. “These days, experienced internet users . . . are just as likely
to be looking up information about how to stay well, which doctors have the best surgical record, or what insurance pricing options are available.”
As more and more of us turn to the Internet for up-to-date answers to medical questions, to join patient discussion groups or to read personal accounts of illnesses, concerns about the quality of information available on the web continue to grow. “It‟s certainly an issue,”
agrees Dr Pauw. “We often find sites that have downright dangerous information on them. It is very easy to start a website and there are many that provide completely biased information.”
Dr Andrew Stanley, director of oncology pharmacy at Birmingham City Hospital, is working a project to tackle the problem of unreliable information on the Internet and is in no doubt about the need for such measures. “Friends and neighbours are naturally keen to
help the person with cancer. Via the Net they gather information from all over the world. The trouble is, with most of it, there is no quality control.” Dr Paul Lambden, co-author
of the guide „Your Health and The Internet‟, is equally concerned about people being particularly vulnerable at such times. “People can be emotional or distressed when they
or a loved one are unwell, and some web sites provide ill-informed advice at this difficult time.”
Since it is not only misinformation, but the danger of patients‟ misinterpreting the
information they gather, many doctors believe that only qualified medical professionals may adequately assess and interpret external sources of information. The ideal solution, Dr Stanley feels, is having someone to explain the significance of the information and show where claims may not be true. While most of us are unlikely to have a qualified medical professional on hand when we surf, this does highlight an important thing to do when in doubt about the quality of the information presented: get a second opinion.
Most of us search the web without a definite plan and simply dive right in. We visit our favourite search engine, type in our query and start trawling through the results. Although popular, this method will often generate a list of hundreds of web sites and, unless we chance upon what we are looking for quite early on, the sheer volume of potential results can prove discouraging if not exhausting.
So filtering the available web pages into a more manageable number is an important first step. If you are using one of the general search engines, like Google (www.google.co.za), Ananzi (www.ananzi.co.za) or Yahoo! (www.yahoo.com), try using their health sub-directories and advanced searching features to improve the accuracy of your enquiry. For example, try using several terms together, like „arthritis‟ and „rheumatoid‟ to make your
search more specific.
Another useful way of filtering your search is to use one of the specialised health search engines out there. One of the best of these is Healthfinder (www.healthfinder.com), the US Department of Health and Human Services‟ directory of health resources. Launched
in April 1997, the service links to thousands of reliable sites from US government agencies, their many partner organisations, and other „dependable sources that serve the
public interest‟. Offering both consumer and professional information, it remains a
massive resource and is visited by over 450,000 people a month. Perhaps the only slight drawback with Healthfinder, and it is a common one faced by South African surfers, is that it refers to almost exclusively American sites and, while there is much overlap between medicine here and in the US, there are cultural differences between the two. In other words, the service won‟t be that useful if you are trying to locate a local specialist
and, when you do meet, their recommendations might differ substantially from those made by their American counterparts.
Local is lekker
If you are looking for local health information, the Health24 portal (www.health24.com) is a great place to start. A well organised gateway with a good directory of links and a reliable search, the mega-site offers information on a wide variety of topics from specific diseases and treatments to fitness and nutrition. Another useful service the portal offers is its panel of over 30 cyber-experts. Each expert hosts their own discussion group where members of the public can post questions and receive free, anonymous advice on a variety of topics from gynecology to yoga. “We‟ve answered nearly 60,000 questions
over the last four years,” confirms Dr Pauw, “and each one can be searched through our archive. It is useful because you can seek information both passively, by reading about a condition, and actively, by asking one of our experts a question that relates directly to your specific issue.”
Possibly the best Internet resource for serious research is MedlinePlus (medlineplus.gov), the US National Library of Medicine and National Institutes of Health‟s site. It is a well
designed, easy to use site and one of the top 250 most visited Internet resources. It provides accurate, up-to-date health information including a verified directory of leaflets for download, links to patient organizations and support groups (although mostly US-based) and access to the online version of the US National Library for Medicine. The site must also be one of the most comprehensive health information resources on the Internet because it also features an online illustrated medical encyclopaedia
(www.nlm.nih.gov/medlineplus/encyclopedia.html) and medical dictionary
One of the best self-help sites available is Net Doctor (www.netdoctor.co.uk) and a great place to conduct your health homework online. Net Doctor offers a wide range of verified information and reputable services and its growing number of self-diagnosis tests (www.netdoctor.co.uk/testyourself/index.shtml) are designed to help you decide whether you should self-treat, visit a pharmacist or call in at your local accident and emergency unit. The tests range from working out your susceptibility to diabetes or cardiovascular disease, to how low your self-esteem is and whether you are an alcoholic. Aside of entertaining budding „cyber-chondriacs‟, the tests include tools which are used daily by
doctors, like Goldberg's depression test. Although the site is commercial and so visitors should always watch out for any bias due to sponsorship, it appears to maintain high ethical standards and subscribes to the Health on the Net (HoN) code of conduct.
Health on the Net
A Switzerland-based web site, Health on the Net (www.hon.ch) has come to the rescue of health seekers struggling to separate the good from the bad online. The organisation started out as a campaigner for high-quality medical and health information on the Internet, alongside the likes of the Internet Healthcare Coalition
(www.ihealthcoalition.org), but has become a major international resource in its own right. HoN has developed a code of conduct to which other web sites can subscribe. Its „seal of approval‟ is its logo and is a pretty good guarantee that the site is trustworthy. Its absence, however, doesn‟t necessarily mean that the site‟s content is questionable
because the number of participating sites is still quite small. The PPASA (www.ppasa.org.za), one of the best South African sexual and reproductive health resources online, offering a range of excellent free pamphlets for download, is just one example of an excellent organisation that has yet to subscribe.
Health on the Net has also created a series of tool to make our searching easier including a free Search Toolbar that will only return results from accredited sites (see www.hon.ch/HONcode/Plugin/Plugins.html for more information). The HoN initiative is important because we are often wrongly reassured when we visit a site that contains advice that matches what we already know about a condition or statements that we have seen repeated on other sites and it is a quick way for us to confirm that the source of the information has indeed been verified. If the site isn‟t accredited, try to identify who the
authors or contributors are and their affiliations or financial interests. It may also be prudent to question sites that credit themselves as the sole source of information on a topic or disrespect other sources of knowledge.
Although less than 2% of Internet users have been seriously harmed by misinformation, it is surprising how casual and trusting of the online environment we tend to be. The Pew survey revealed that only one in four surfers bothers to verify a site‟s legitimacy. Finding
the information fast appears more important than finding a trusted name, but that is the first thing that experts caution against. “Make sure you allow plenty of time for your
search”, urges Susannah Fox, “not only to find relevant information, but to corroborate it as well.” Most experts agree that the best approach is to start with the web site of a known, trusted person, institution or organisation and then substantiate any information by cross-referencing it against several other sites or sources.
The currency of the information being presented by a site is also important. Health information constantly evolves and changes as research discovers new treatments and medicines. So make sure the information is being updated by checking when the page was last modified or revised (this information is usually posted at the bottom of the page).
As well as evaluating the actual content of the site, experts warn against „online physicians who propose to diagnose or treat you without a proper physical examination and consultation regarding your medical history‟ and a good place to report such practitioners is Quackwatch (www.quackwatch.org). If you are about to supply the site with medical information about yourself, make sure you read its privacy statement and
make certain it will be kept confidential. And, lastly, don‟t be fooled by an impressive-
looking design and comprehensive list of links to well-known organisations. Any web site can link to another and this does not imply it has been endorsed by it.
There are several organisations out there that offer tips for evaluating health web sites and criteria you can use. The Internet Healthcare Coalition (www.ihealthcoalition.org) and DISCERN on the Internet Project (www.discern.org.uk/discern__instrument.htm) offer two of the more commonly used sets of guidelines for consumers.
Read the fine print
In the end, it is the very qualities that make the Internet such a rich source of medical information ― its global, decentralised structure and ability to facilitate instantaneous, free interchanges ― that also make it an easy channel for potential misinformation. Some
experts argue for greater regulation of this powerful new medium, but history teaches us that this approach seldom works. Educating the web site creators themselves seems the best bet in the long run, but, as is so often the case, your best defense against the dangers of misinformation remains your common sense. As Denise Silber, founding member of the Internet Healthcare Coalition, cautions “get more than one opinion, be wary of
„miracle cures‟ and always read the fine print”.