The holes in the net

By Deborah Cassrels
August 11, 2005

Medical information found online can be a great source of fear and confusion for the uninitiated, writes Deborah Cassrels.

Jennifer Forbes was taking a shower when she felt "a huge, round lump, like a marble under the skin" on her left breast. She was sure she had breast cancer. That was in November. The time since has been angst-ridden for the 29-year-old teacher from Blacktown. It took a month and 10 doctors repeatedly returning negative test results before an aggressive three-centimetre-wide tumour was confirmed.

Forbes began chemotherapy and radiation treatment, which she completed last month. She has her fingers crossed.

Before diagnosis she was frightened, depressed and in the dark. Desperate for information, she trawled hundreds of websites and internet chat rooms for anything about breast cancer.

Much of the information was repetitive, misleading, inappropriate or inaccurate; much was US-based, using statistics that didn't apply to her because of her age. Most used scientific jargon.

"It was scary thinking I had something, then finding all this information about it but not having the tools to comprehend it," she says. "You get that sort of understanding from doctors - when they didn't give it to me and I was left by myself, it was very scary. Nobody explained the disease. You think you're going to die. If you're accessing sites without the background information from your doctor, they can be very misleading."

Like many other patients, she found survival statistics difficult to understand, out of context and distressing. Forbes is just one person interviewed by the Herald who has found information on the net to be a mixed bag of benefits and blights. In the early stages of her health crisis, she tapped into Google, which spat out wads of information both alarming and useful. Still a keen user of the net, she is now much more discerning.

The era of the "expert patient" consuming profuse amounts of information has spawned new doctor-patient relationships and roles. Despite hazards, the net has become an important tool for both.

Yet you need to be pretty savvy to navigate around misinformation, redirection to the same sites and extraneous US medical literature that may be too scientific or inappropriate for Australians. In some cases, shonky websites promote wacky miracle cures while trading on the gullible and advise patients to quit conventional therapy altogether.

On the plus side, specialists and patients believe more knowledge from legitimate sites is empowering and supportive, ranging from up-to-date literature, to chat rooms, to advice about complementary treatments such as massage, meditation and aromatherapy.
Forbes found some websites helpful, particularly those with other patients'


Oncologist Ian Olver, head of The Cancer Council Australia's medical and scientific committee, and clinical director of the Royal Adelaide Hospital Cancer Centre, encourages patients to use the internet. Online information, he says, creates a healthier climate, ensuring doctors keep up to date.

Using the net as a value-added tool enables patients to take charge of their disease, he says.

Yet the challenge for the modern doctor is to provide direction on a broad scale. "Patients come in with [information] you haven't seen because it was only released yesterday, and I think that's a good thing. You may not have heard about some particular information but you can bet one of your patients has. I think patients feel empowered, but they can also be overwhelmed."

Olver describes the case of a patient in her 30s who accessed so much information that she couldn't choose which cancer treatment to have. She died having waited too long to take action. "The internet was a big source of information. She agonised over every bit. She'd found treatments in Germany, India, the whole gamut. She certainly kept me on my toes. She was very scared that any treatment would affect her quality of life."

Dr Shiong Tan, chairman of the Royal Australian College of General Practitioners' national standing committee on quality care, says informed patients take an active interest in health maintenance and prevention of illness. But as the net plays an increasingly vital part in our lives, it's imperative to minimise the ill effects of unreliable data and intervention.

How do you separate the wheat from the chaff? Interpreting information and assessing its reliability with some guidance from your GP is the key.

Where patients used to rely solely on the old-style family doctor, now they have autonomy. The "expert patient" is here to stay, says Tan.

The other issue is making sure quality information is accessible to everyone. "It's all very well to be right but it's another thing to make sure the information is accessible to the Australian community, which is quite diverse and ranges in culture, literacy and numeracy."

Information about innovative treatments can be a lifesaver, or it can be heart-breaking. Patients' ready access to information about drug trials online can produce a scourge of discontent. For example, one drug recently found to increase the cure rate in breast cancer patients after surgery has not yet been listed on the Pharmaceutical Benefits Scheme.

Olver says: "Patients know the data but effectively can't get access to the drug, and that's going to be an increasing problem."

Pharmaceutical companies keen to ply their wares online can also be misleading. Drug and supplementary regimens are tailored to individual patients and, he says, the balance between the efficacy and toxicity is crucial.

Patients can also use web-based resources to self-diagnose, assuming the roles of doctors and bypassing years of medical training. "Most of the time, there's no way you could get enough information to be able to diagnose by yourself," Olver says.

Patients are increasingly bringing piles of internet printouts to their doctors, prolonging consultations while challenging doctors.

But Dr Harry Haber, a bulk-billing Newtown GP, says general practitioners who see about four patients an hour don't have time to read loads of internet documents.

He says the net is often more of a nuisance because so much information is junk. "If people start bombarding us with internet information, how are we going to make sense of it?"

He describes online self-diagnosis as a joke. "The internet gives you a whole lot of symptoms, it puts them into a little mix-master and then spits out an answer. That's not the way you make a proper diagnosis."

Psychologist Dr Paula Barrett, director of the FRIENDS program for the prevention and treatment of anxiety and depression in children and teenagers, is outraged anyone would make a diagnosis on "flimsy" online information, saying it takes years of training.

"Some teenagers have gone online and become obsessed with another's story. Histories of success make them feel really good. Sometimes they become obsessed with a medication or the name of a program. They don't understand what it is. Parents also read stuff and form definite opinions, but they haven't been fully informed if it's appropriate for their children."

The parents of children who suffer from anxiety, panic, refusal to go to school, social problems and learning disabilities find online quick-fix answers appealing, says Barrett. But misinterpreting information can be catastrophic.

She thinks the net is beneficial in remote areas, where people can't access pediatric programs and information easily.

Gillian Batt, director of support services at The Cancer Council NSW, says people who have just been diagnosed are the most vulnerable, easily influenced by doom merchants on missions to share their experiences.

Chat rooms, she says, are magnets for disillusioned patients and misinformation.

"We're looking at setting up a chat room but we're looking at ways we can moderate it so there's someone who can look over the messages."
People should avoid clicking into search engines such as Google because of the immense database and screeds of dubious information, Batt says.
She cites one that portrayed itself as a cancer information support society.

Yet she believes it was most likely set up by one person with a grudge. It says, "For the most common treatments for cancer - surgery, radiotherapy and chemotherapy - there's no scientifically acceptable evidence that these treatments produce any significant impact on survival. In many cases, radiotherapy and chemotherapy have been found to produce more harm than good."

"If you went on this site and you'd just finished six months' chemotherapy you'd get very angry," Batt says.

Olver shares this gripe with other health-care providers and support groups: "Anyone can make a professional-looking web page and patients don't necessarily distinguish between something that's making outrageous claims and something that's evidence based on scientific literature."

Commercial sites that prey on vulnerable patients who may have exhausted conventional treatment options are another problem. Claims of cures through stringent diets, expensive herbal therapies and medical conspiracy theories attract desperate people.

But there are worthwhile websites, too. Philip Hopkin, chief executive of the Arthritis Foundation of NSW,says the Cochrane Collaboration's website has great fingertip information and reviews some unlikely sources. "They look at all the clinical trials worldwide, analyse and rate them. They've got the skills and ability to weed out the [chaff] from the [Medical Journal of Australia] or the British Medical Journal."

The foundation last month launched a self-help internet course called Challenging Arthritis. But the foundation faces a dilemma: "Most of our patients are elderly. For some the internet is marvellous, for others it's a foreign land."

For Leanne Way, 30, from the Central Coast, who has suffered from severe rheumatoid arthritis since she was eight years old and lives with chronic joint pain, fever and fatigue, searching the net is second nature.

She thinks it is a great tool but finds a lot of the information aimed at older people. "I use the patient-support site so I can find out things your doctors don't necessarily tell you. Some of the medication has common side-effects and you wonder if it's normal," she says.

Talking to other patients and reading their experiences is useful. Leanne, who works part-time at the Arthritis Foundation, started a support website that is linked to the foundation, called yawa.arthritisnsw.org.au.

"I did come across a lot of stuff that was basically crap but I already had the background knowledge," she says.

Mothers a source of comfort for each other Rebekah Clark's daughter, Jessica, underwent surgery and 19 months of chemotherapy following diagnosis of bilateral retinoblastoma - cancer of the eyes - at 10 months. The rare disease occurs in about one in 30,000 births. Jessica now has a prosthetic left eye and good vision in her right eye.

When Jessica, now six, was diagnosed, her mother "went straight home and looked it up on the internet because I wanted to know what it was. I wanted to be armed with all my questions and what to expect. It was pretty daunting. Some of the things I didn't want to read - that she might lose both eyes."

Clark found online personal stories a life support. "I joined a few chat groups ... generally mums going through the same things. Everyone would post messages of support during various procedures."

She found the site by searching on the name of the disease and was directed to a US hospital link. "Because it's such a rare disease, you don't have someone round the corner who has it and I was less likely to get unreliable information."

Jessica is in remission.

Useful Cancer websites


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