Getting it online: The emergence of the e-patient

The last decade has seen an explosion in the availability of health information online. Patients are better educated about illness, but there's also an element of cyberchondria with patients wasting doctors' time explaining illnesses they don't have.
Your child's under the weather. You're certain the little tyke's running a fever. You're not sure what to do, so you turn to the internet and find some tips from a source you figure you can trust, like the world-renowned Hospital for Sick Children in Toronto.

You follow those tips and instead of adding to the lineup in the emergency department, you deal with the problem at home and save the health-care system a little money.

But it wasn't always that way. You could have turned to the web and found information that was lacking. In June 1997, an Italian researcher found that only four of 41 websites closely followed the guidelines of treating a child with fever. The study concluded there's "an urgent need to check public-oriented health-care information on the internet for accuracy, completeness, and consistency."

A year later, consumer health information took a big step towards hitting the digital age when MedlinePlus — created by the U.S. National Library of Medicine — went online.

The site offered information on a few general health topics as well as "extensive information about 20 specific diseases and conditions" in an attempt to meet a growing consumer demand for health information.

Not a whole lot of information by today's standards — but it was a start.

More than 8 in 10 adults who go online look up health information according to the U.S.-based Pew Internet and American Life Project. ((iStock photo))
In November 2000, the Pew Research Center found that 55 per cent of Americans with internet access had searched the web for health information. Significantly more women (61 per cent) than men (47 per cent) turned to the web for health info.

Go to your favourite search engine, type in "health information" and you'll get nearly 200 million results. Top of the list might be MedlinePlus, a site backed with solid credentials.

Maybe you've got a bit of a headache and — you're not sure — you think it might be different from those headaches you get once in a while. So you type in "head" and "pain," and get another 100 million or so results — except this time you see "Brain Tumors, Brain Injury and Head Pain." You feel a little faint, but you want more information.

Thinking the worst

In November 2008, researchers at Microsoft released a study that found people searching the web for medical information frequently conclude the worst about what's ailing them. The researchers found that of more than 11,100 search sessions, 5.3 per cent led to a "query escalation" during which the subject began associating a common symptom with a serious medical condition. The subject tended to look for information like "headache tumour" instead of the far less terrifying "caffeine withdrawal symptoms."

Growth in most popular medical online search topics since 2002

  • A specific disease or medical problem (49% of adults, up from 36%).
  • A medical treatment or procedure (41% of adults, up from 27%).
  • Exercise and fitness information (38%, up from 21%).
  • Prescription or over-the-counter drugs (33% of adults, up from 19%).
  • Alternative treatments or medicines (26% of adults, up from 16%).
  • Depression, anxiety, stress or mental health issues (21% of adults, up from 12%).
  • Experimental treatments or medicines (15% of adults, up from 10%).

Source: The Pew Internet and American Life Project

The term "cyberchondria" was born in the first year of the new millennium to describe people who assumed the worst.

Of course, back in the last millennium you could have jumped to the same conclusions with a good old-fashioned library card.

"Misinformation travels along exactly the same social pathways as accurate, useful knowledge," Brett Taylor, an emergency department pediatrician at the IWK Health Centre in Halifax, told "In fact, it may be that misinformation, because it is more likely to be sensationalized, distributes better."

A study released in September 2009 suggests that the web is changing the doctor-patient relationship.

Taylor says that while parents are coming in to the ED armed with more information, he's spending more time trying to allay fears that their child may be sicker than they are.

"There has always been a normal tendency to worry about our kids and their health. But the example with H1N1 flu was a good one; the core message that needed to be heard was, 'This is important, you should plan for it, but it is very unlikely to seriously harm your family.' Instead, the deaths of a few individuals resulted in a stampede effect, which nearly derailed immunization attempts."

Taylor says emergency department visits rose dramatically in the fall of 2009, but the number of hospital admissions rose only modestly.

"In other words, the illness wasn't as bad as the fear of the illness."

The internet may yet usher in an era of easily-accessible health records. The Canada Health Infoway was set up with the goal of getting health records for all Canadians online by 2016. ((iStock photo))
At the Pew Center, researchers say the relationship between patients and medical professionals is changing - and the medical professionals should be listening.

"One-third of American adults care for a parent or another adult," Susannah Fox, the centre's director of health research, told delegates to the Health 2.0 conference in San Francisco in October 2009.

"Another third of American adults had a medical emergency in the past year. And what we've seen is that a medical crisis seems to flip a switch in people. They want to become superheroes. And increasingly, the internet is becoming their weapon of choice."

In a study published in June 2009, the Pew Center found that 42 per cent of all American adults said "they or someone they know has been helped by following medical advice or health information found on the internet." That's up from 25 per cent in 2006.

Only three per cent said they or someone they know has been harmed by following health information or advice found online.

"People don't tend to do something stupid because they read it on a website," said Dr. John Powell, associate clinical professor in epidemiology and public health at Warwick Medical School. "The problem for professionals is that some patients take printouts to doctors with worries about something they think they might have, or with concerns about some side-effect they have identified. So they don't take a harmful course of action, but they use up doctors' … time to explain what these printouts mean."

A social connection

Powell is studying the growth and implications that e-health has for improving people's lives. He led a team of researchers who looked at whether diabetes patients could improve the quality of their care by using a virtual clinic to manage their disease.

"One of the major reasons people use the internet for health is to learn about other people in the same situation," he said. "My research suggests three benefits from this that make people [subjectively] feel better: knowing you are not alone; knowing that there is some hope, that others have gone through what you are going through and come out the other side; and interacting with others online, you gain the empathy and understanding of peers."

Powell is convinced the internet will lead to major changes in the way people look after themselves and in their relationships with health services.

"They will be given more information about their condition, easier contact with experts and access to peer support from 'expert patients'. In return, they will be expected to take on more responsibility for keeping themselves healthy and monitoring their own condition."

In the meantime, at the emergency department at IWK Health Centre in Halifax, front-line doctor Brett Taylor is still waiting for the internet's great payoff for health care — sharing not only information about diseases and conditions, but complete patient records across long distances as well.

"[The internet] was supposed to let the emergency pediatrician in Halifax see and guide care for the child in Antigonish. It was supposed to provide just-in-time information at the bedside so that when I ran into the child in the ED with a truly rare condition, I could understand what the risks were. Decision support systems were supposed to give me feedback on my own behaviour as a physician, letting me constantly improve. Where the hell are these things?"