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These days, were diagnosing and even treating what ails us by alendar


These days, were diagnosing and even treating what ails us

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                                                                                                                                                      a hardware store, is driving and plans to travel overseas
                                                                                                                                                      with his friends.

                                                                                                                                                        “It’s all because we used the internet,” says Julie.
                                                                                                                                                      “Without it, the chances are we may never have known
                                                                                                                                                       about the benefits of DBS, nor would we have found
                                                                                                                                                        Dr Stell. There’s no doubt it changed my son’s life.”

                                                                                                                                                         DIAGNOSTIC DILEMMAS
                                                                                                                                                          The Wilmots are part of a burgeoning new trend. An
                                                                                                                                                           increasing number of us are playing doctor, using the
                                                                                                                                                          internet to look up symptoms and diagnose medical
                                                                                                                                                         conditions, order self-diagnostic kits and medical equip-
                                                                                                                                                        ment, and even treat ourselves with medications or herbal
                                                                                                                                                      remedies we purchase online.

                                                                                                                                                        Some of us are deliberately avoiding doctors because

                                                                                                                                                      of the cost and time involved, or because we’re afraid of
                                                                                                                                                      what we might find out. Others are too embarrassed to talk
                                                                                                                                                      about our health problems, preferring not to discuss such
                                                                                                                                                      sensitive topics as our weight, diet, alcohol consumption
                                                                                                                                                      and other bad habits. Some of us, due to bad experiences in
                                                                                                                                                      the past, simply don’t trust our GP, or feel we can put more
                                                g and even                                                                                            time and effort into researching our conditions than any
                            s, we’r e diagnosin . It’s a hands-on
                 These day             s ourselve
                 treating  what ails u
                 approach w dvantages, b
                  A has m
                           any a             r, c
                                 with dange what you’re doing.
                   B is fraught           know              ly –
                   C can be
                             OK if you             swers app
                                find ou t which an
                   Read on to           KRON
                                BY JOHN
                   and when

I        T WAS 2PM ON A SUNNY AFTERNOON      in February 2005
         when Julie Wilmot logged onto yet another medical
         website. Somewhere out there in cyberspace, she
         reasoned, there must be the answer she was looking
         for. The 41-year-old nurse was desperate to find a
         cure for her son, Luke, who had been diagnosed
with a rare neurological disorder called dystonia when he
was six. The disorder causes involuntary muscle spasms and
stiffening of the body and, in Luke’s case, had become so
chronic that he was now confined to a wheelchair.
   Julie had consulted specialist after specialist in her home
town of Perth, and all had said the same thing: Luke, now
                                                                 began scouring the internet in the hope that – somewhere,
                                                                 somehow – they would stumble upon a cure.
                                                                    Finally, Julie caught a lucky break. She clicked onto the
                                                                 Dystonia Medical Research Foundation website and came
                                                                 across an Australian neurologist, Dr Rick Stell, who spe-
                                                                 cialises in Deep Brain Stimulation (DBS). It is a surgical
                                                                 treatment in which electrodes are placed deep into the
                                                                 brain, where they deliver electrical impulses to control
                                                                 muscle movement. It had been successfully used to treat
                                                                 dystonia sufferers overseas, but was not widely known in
                                                                 Australia. Julie knew this was the answer to her prayers.
                                                                    In May 2005, Luke underwent the six-hour operation
                                                                                                                                PHOTO: PHOTOLIBRARY

17, would never walk again. But Julie and her husband Ian,       at Sir Charles Gairdner Hospital in Perth. Just one month
a teacher, refused to accept the prognosis. Together they        later, he was walking. Today he is working part-time in

56   H E A LT H S M A R T A u t u m n 2 0 0 7                                                                                                                                                                  57
one professional is able to set aside.Whatever the reason, the        is awash with “inaccurate, incomplete and deliberately                                                           more empowered to take care
facts remain: playing doctor has many advantages, but it can          biased health information”.                                                                                      of our health, we have
also be fraught with danger.                                            The biggest problem, he says, is that most people                                                              become busier than ever                                                                                     TIMES
                                                                                                                                                                                                                                                                                                   DIY medical tests
   Every year, five million Australians search for health             don’t know how to tell a serious website from a shonky                                                           before and don’t have the                                                                                   are now big
information online. A 2004 survey conducted by ACNielsen              one. “Most people rely on a search engine like Google                                                            time to do it,” says Crimmins.                                                                              business. Here’s
found that 66% of internet users are satisfied with the               or Yahoo, where the choices offered first tend to be the                                                         “People are saying, ‘Just give                                                                              a sample of what
quality of health information available on the web. What’s            most popular rather than the most reliable,” Yellowlees                                                          me a simple test that I can do                                                                              you can test for
                                                                                                                                                                                                                                                                                                   at home.
more, a HealthSmart poll carried out in April 2006 revealed           says. “And some of these websites can look exceptionally                                                         when and where I like.’ ”
that only 5% of internet users think following medical                professional – so it’s hard to differentiate between what is                                                        That was certainly how
                                                                                                                                                                                                                                                                                                   Available in
advice from the web can be dangerous. That indicates                  authoritative and what’s not.” (For tips on finding a reliable                                                   Jenny Howard of Warradale
enormous public confidence in web content. Unfortunately,             medical website, see box overleaf.)                                                                              in South Australia felt when                                                                                bowel cancer
                                                                        However, he is quick to point out that when you stick                                                          she received a home-test kit                                                                                cholesterol
                                                                      to credible medical sites, the internet can be a valuable                                                        for bowel cancer last year.                                                                                 diabetes
Google on the term “health” and                                       health resource: “I encourage all of my patients to go                                                              “I had my gall bladder                                                                                   pregnancy
the search engine will return about                                   to specific websites that I know are helpful, so they can                                                        removed years ago and I’d
940 million results. Narrow your                                      receive accurate information and make links with others                                                          heard this was associated with
                                                                      who have the same condition.”                                                                                    an increased risk of bowel                                                                                  Available
query to “symptoms” and you’re
                                                                                                                                                                                       cancer, so it had been at the                                                                               overseas:
down to slightly over 96 million                                          HOME-TESTING HYPE                                                                                            back of my mind that I should                                                                               anaemia
web pages at your fingertips                                              Think you might have diabetes? Curious about your                                                            get checked,” says the 56-                                                                                  bladder cancer
                                                                          cholesterol levels? Worried you might be going through                                                       year-old banker. “But I work                                                                                gonorrhoea
                                                                          menopause? Not that long ago, you could find out                                                             full-time and have six grand-                                                                               hepatitis B
we may not always be in a good position to judge.                         only by visiting a doctor, but these days you can test                                                       children. I’m busier now than                                                                               hepatitis C
   Just look up the word “depression” or “osteoarthritis”                 yourself at home thanks to a wide range of medical                                                           I’ve ever been. Who’s got the                                                                               HIV
                                                                                                                                                                                                                                                                                                   kidney disease
and the chances of finding a website that contains safe,                  test kits that can be bought online, at chemists and                                                         time or inclination to have
reliable, unbiased information are remarkably slim, according             even in supermarkets, for as little as $15. So, in addition                                                  a colonoscopy?”                                                                                             male infertility
to research carried out by two Australian universities.                   to testing for pregnancy, you can now screen for                                                                The home-test was quick,                                                                                 osteoporosis
A 2002 study conducted by the Australian National                         bowel cancer and glaucoma (through the US website                                                            easy-to-use, and simply in-                                                                                 prostate cancer
University (ANU) assessed the quality of 15 Australian           and even check to see if you have high                                                    volved using a cotton swab to                                                                               stomach ulcer
                                                                                                                                                                                                                                                                                                   stress levels
medical websites that dealt with depression and found                     blood pressure.                                                                                              wipe over a faecal specimen
that only half the sites bothered to warn people about                       Home diagnostic testing is already booming in Europe,                                                     once it had been deposited                                                                                  thyroid problems
the side effects, dangers and contra-indications of anti-                 the UK and the USA, and now Australians are embracing                                                        in the toilet bowl. She then                                                                                urinary tract
depressants. Overall, they rated the quality of the health                the trend, too, spending more than $200 million on kits                                                      posted the sample to a local                                                                                  infection
information on all of the sites as “relatively low”.                      last year alone. The reason? People are just too busy to go to                                               pathology lab and waited for
                                                                                                                                                                                                                                                                                                   + Local doctors
   When Monash University conducted a similar study in                                       the doctor, says Tom Crimmins, managing                                                   the test results. When they came through, it was bad news:         investigate the matter further. Nor is
                                                                                                                                                                                                                                                                                                   warn against
late 2003 on medical websites that dealt                                                      director of Health-One, which markets                                                    the test revealed some irregularities and Jenny was referred       there any way of knowing if you’ve       purchasing tests
with osteoarthritis, they                                                                     home-test kits.                                                                          to a specialist.                                                   even carried out the test correctly,     from overseas,
didn’t fare much better:                                     E  WEB                              “The irony is that, as we have become                                                    “They found a cancerous growth,” she says. “But I was           says Dr Carolyn Block, a GP in           where quality
                                                USE TH
only 29.9% of the sites         W   HY WE                       polled 1
                                                                         006                   more knowledgeable about health and                                                     lucky because it was caught in the early stages.” Jenny            Double Bay in Sydney. In particular,     control and
                                                     lthSmart                                                                                                                                                                                                                                      instructions
tested bothered to cite                    006, Hea                                                                                                                                    has no doubt that the convenience of the home-test saved           she says, she’s noticed a problem
                                 In April 2           und that:                                                                                                                                                                                                                                    may not match
research papers to support                  ns and fo                       informati
                                                                                     on                                                                                                her life. “Now I’ve told all my family and friends to do           with home medical equipment, such
                                  Australia                       l health                                                                                                                                                                                                                         Australian
the information that was                                 r genera                     ions                                                                                             the test, too.”                                                    as blood pressure monitors.
                                             the net fo                       d condit
listed on their website.          58% surf                          diagnose                                                                                                              Experts are keen to caution that not all home-tests are           “A 60-year-old woman came to
                                                       fe ssionally
                                              arch pro
Similar online studies con-        42% rese                   edical ne
                                                                        ws                                                                                                             reliable. Some kits that are freely available on the internet –    see me recently convinced she had
                                                     ast of m
ducted overseas have also
                                    32%  keep abre                    ition issu
                                                                                 es                                                                                                    including one that claims to be able to detect HIV – do not        a brain tumour,” says Block.
found a long list of faulty                                  and nutr                                                                                                                  have TGA (Therapeutic Goods Administration) approval.                The woman was feeling light-
                                               arch fitness
                                    29% rese                            plements
medical facts about all sorts                                 es or sup                                                                                                                (To avoid buying a non-approved test, first check to see if it     headed and had been suffering dizzy
                                                 for medicin
of      health     conditions,       21% shop                   themselv
                                                                           es                                                                                                          is listed on the Australian Register of Therapeutic Goods          spells, and said she was generally
                                                                                                                                           PHOTO: PHOTOLIBRARY

                                                                                                                                                                 PHOTO: GETTY IMAGES

prompting experts such as                              or treat                                                                                                                        database at                            feeling unwell. As it turned out, she
                                     15%    diagnose                     t rooms
Professor Peter Yellowlees,                                    ps or cha                                                                                                                  Another problem is that, without consulting a doctor,           had recently bought a blood pressure
                                                  pp ort grou
former director of Queensland         7% join su                                                                                                                                       it’s easy to get overly distressed or confused if the test turns   monitoring device to use at home.
University’s Centre for Online                                                                                                                                                         up positive. A positive result doesn’t always indicate a             She had tested herself the week
Health, to warn that the internet                                                                                                                                                      serious health problem, but can simply mean you need to            before and had been shocked to

58   H E A LT H S M A R T A u t u m n 2 0 0 7
              ITES, CLICK
    FOR SAFE S    ing the web
                              for health
                                                                                         TREATMENT TRAPS
              you’re search           ndy.                                                         There’s no doubt the most risky part of DIY
                       is checklist ha
                       keep th
   information,                                    s clearly disclo
                                                                      sed                             doctoring is when patients attempt to treat
                                site owner ha
1/ Chec    k that the web                 the site has    contact                                                  themselves, either with prescription
                       me, and that                                  not,
    his or her na                                ofessional? If                          drugs or herbal remedies bought online. Many believe
                             e a medical pr
    deta   ils. Is he or sh                clearly stat   ed? For
                        pective been                                ’ve                  that just because supplements or herbs are “natural” they
    has their pers                                 rvivor,” or “I
                                east cancer su                                           must be safe, but according to Dr Tracey Bessell, acting
     exam    ple, “I’m a br                 k for the pa   st ten years."
                        ure every wee                                                    director of the Patient Safety and Quality Unit at ACT Health,
     had acupunct                                                 it a
                                               ganisation, is
                            ned by an or                               n                 that’s simply not the case: if a product is effective enough to
 2/ If   the site is ow               ity? The w    eb address ca
      credible     health author                               rnment                    make you feel better, it can also produce side effects.
                                               ple, a gove
                          here. For exam                educational
      provide clues                  e address; an                                         “One of the dangers with self-medicating is that herbs
       agency      has .gov in th                               nisation
                                             essional orga
                          s .edu; a prof                                .
       institution ha                  research so    ciety has .org
       such as     a scientific or                            al that shows
                       site contain th
                                           e HONcode se
                                                                                         Do you intend to take online health
   3/ Does the                  Health on th
                                                 e Net Founda
                                                                                         research along to your next doctor’s
        ap   proval by the                             ctual or opin
                                   n presented fa                                        appointment? Then allow extra time.
   4/ Is th      e informatio                 source mater
                                                                ial such as
                           es it provide                 sity websites
                                                                           ? If
         If factual, do                                                                  A survey of oncologists found that it
                                  or  links to univer
         med     ical journals                   edical qual    ifications of
                              it state the m                               list          extended appointments by ten minutes
          opinion, does                                 Does the site
                    rson giving     that opinion?
          the pe                                  consultant     s?
                             d members or
          advisory boar                                             provide
                                                  ents, does it                          can interact with conventional medications and, while health
                                about treatm                                   ns,
           When talking                                     e pros and co
     5/                                   they work, th                                  professionals are trained to know what these interactions
            inform    ation on how
                             rnatives?                                                   are, the public often has no idea,” she says.
            and any alte                                 ctions about
                                        r clear instru
      6/ Doe       s the site offe                used? Ar     e there                      Three years ago Gayle*, a 51-year-old manager from
                               ion should be                              ion
             the informat                               the informat                     Goulburn, NSW, chose not to consult a doctor when she felt
                                   it explain that
              ca utions? Does                     substitut    e for visiting            unusually tired. Gayle was embarrassed by recent weight
                                 be used as a
              should never                                                               gain and wanted to avoid it being raised in a GP consultation.
               a health prof                                 ted? Health
                                          rmation upda                                   Instead, she looked up her symptoms on the internet and
        7/ Whe        n was the info              tantly, so it’s
                                 changes cons                                            came to the conclusion she had anaemia.
                                 ntly updated.                                              For the next 18 months, Gayle took iron-enriched vitamin
                to be freque                                       r bias? Can
                                                y potential fo                           supplements, increased the amount of red meat in her diet
         8/ And fin       ally, is there an                            mercial
                                                   onsors or com
                                  entify any sp                                          and confidently waited for her ailments to go away. They
                 you easily id
                 affiliations?                                            the Net        didn’t. In fact, they got worse. She started developing poor
                                                     the Health on
                                  idelines from                                 n, and   sleep patterns, fungal nail infections and poor concentration,
                  Based on gu                               rary Associatio
                                        US Medical Lib                               .
                  Fo undation, the                ent of Heal     th and Ageing          and had become depressed.
                  the Austra    lian Departm
                                                                                            Finally, Gayle booked an appointment with her GP,
                                                                                         Dr Carole Castles, and discovered she had developed type
                                                                                         two diabetes and also had an inherited disorder called
                                                                                         haemochromatosis (where the body stores excess iron).
   record an abnormally high blood pressure reading.                                     Ironically, it is the exact opposite of anaemia.
     “Almost certainly she was anxious, or had been rushing                                 By misdiagnosing the problem and delaying seeing a
   around, which raised her blood pressure temporarily,”                                 professional, Gayle had allowed her diabetes to worsen. And
   explains Block. “What she should have done was take                                   the iron tablets and extra red meat probably exacerbated the
   another measurement when she was relaxed, but instead                                 haemochromatosis, says Dr Castles. Now, Gayle has to visit
   she doubled her dosage of blood-pressure-lowering                                     the blood bank to be bled, to get her excessive iron stores
   medication and, as a result, her blood pressure fell below                            under control.
   normal levels. That was what caused her fainting and                                     “The thing to remember (if you are going to take matters
   dizzy spells.”                                                                        into your own hands) is to set a realistic time limit, so that
     There’s no denying that home medical tests can and                                  if you don’t improve – or you get worse – then you see
   do save lives, but only when they are correctly used. That’s                          a doctor,” says Dr Castles. “In Gayle’s case, I understand why
   why experts recommend purchasing such tests from a                                    she did it: she’s a bright woman who’s used to working
   chemist, where you can receive personal instruction before                            things out for herself.” 
   using them, rather than over the internet.                                               *Not her real name.

   60    H E A LT H S M A R T A u t u m n 2 0 0 7

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