Although individual online health surveys can elicit more candid answers than face-to-face queries, concerns about privacy and imprecise assessments are arising from such...
They’re the kind of questions that even a close friend might not dare ask. Have you ever had problems with sexual dysfunction? Have you used intravenous drugs? How often do you get drunk? Are you going through a divorce or separation?
Yet in the last year or so, visitors to online health sites have begun to answer such personal queries routinely in the form of electronic questionnaires called health calculators. Dubbed health profiles, health appraisals or health risk assessments, these multiple-choice surveys are now among the most popular health features offered online, site administrators say. They’re the virtual health world’s answer to the regular checkup--only more revealing, in one sense.
“People are more honest answering a computer than answering a doctor,” says Dr. Ron Blankenbaker, a Chattanooga, Tenn., physician who helped design the first written health risk assessments some 30 years ago. “Computers don’t raise an eyebrow.”
Health calculators are more likely to raise a smile at first, because they mix medicine with a little fortunetelling. The popular site RealAge.com, for example, keeps a running calculation of your “real,” or biological, age as you answer questions about lifestyle and family history. HealthCentral.com will estimate how long you have to live, as well as offer a hearty “congratulations” for healthy habits such as not having sex with intravenous drug users. And the irreverent DeathTest on TheSpark.com will name the very day your number is up.
Many family doctors see this medical tarot-reading as essentially a gimmick to attract customers, and some privacy advocates’ fears about unauthorized access to personal information have already proved founded.
But the sites consider themselves in the vanguard of a larger shift in medical care: from a paternal, top-down, doctor-driven system to one in which patients make more decisions for themselves.
“This is the way health care is going, and there’s no turning back,” says Dr. Brad Bowman, a Portland, Ore., internist and founder of WellMed Inc., one of the leaders in creating online assessments. WellMed licenses its products to about 30 Internet sites and estimates that almost half a million people have used its general questionnaire, called Health Quotient. “Individuals are taking control of their own health care, and we’re here to help them do it. There’s now a vast library of information out on the Web, and the health assessments are the front door.”
Click, breast cancer; click, high cholesterol; click, family history of heart disease: Those entries, among others, connected occupational therapist Linda Watkins, 53, of Beaverton, Ore., to dozens of sites addressing high cholesterol and what to do about it.
“That helped me very much,” says Watkins. “I’m a breast cancer survivor, I spend all my time with my doctor talking about that. When I got diagnosed with high cholesterol, my doctor just said, ‘Here,’ handed me a pamphlet, and that was that. I had no idea what to do. The WellMed site gave me a slew of links that helped me understand my cholesterol reading and how to change my diet.”
This is the ideal experience, online access complementing visits to the doctor and providing real comfort to people with specific ailments, like Watkins’.
Access to Groups Can Ease Anxiety
In a series of studies among breast cancer patients and people diagnosed with HIV, researchers at the University of Wisconsin have found that those with computer connections to support groups and information feel less anxious and less helpless than those without such easy access.
“The amount of time those patients spent with physicians also went down a little,” says Deryk Van Brunt, a UC Berkeley professor of public health who’s also the chief operating officer at HealthCentral.com. “The computers help people manage existing conditions.”
For all that, however, doctors who study health calculators are skeptical about their value for people who don’t suffer from existing conditions but are simply curious about the state of their health--the so-called “worried well.”
“The questionnaires remind me very much of the risk assessments we were doing 20 years ago,” says Yosuke Chikamoto, a health education specialist at Cal State Fullerton who designed Stanford Medical School’s highly regarded general health assessment. “Back then, we were just learning about the effects of lifestyle and habits on health, and this stuff was all new. But nowadays we all know about the importance of lifestyle, and you can’t say to people, ‘Exercise more,’ and ‘Watch your cholesterol,’ and expect them to change. We know that doesn’t work.”
Part of the problem, says Chikamoto, is it’s not possible to get a precise reading on most people’s health risks by asking just 25 to 30 questions, as most online calculators do. The assessments are very blunt instruments.
“One size,” he says, “does not fit all.”
Take body mass index, one of the most common elements in risk assessment questionnaires. The BMI assigns weight ranges according to gender, height, weight and body frame (small, medium or large). A BMI of below 26 is considered healthy, and a score of over 26 is elevated. But here’s the rub: Many people who are perfectly fit score in the high range, because muscle is denser than fat. No wonder they don’t jump when the health calculator prods them to get on a weight-reduction plan.
Beware of health calculators, too, if you like a drink or two after work. The teetotaler calculators will almost always warn you to cut down--even though there’s convincing evidence that moderate drinking may actually impart cardiovascular benefits.
“The subject of alcohol and its effect on health is a very controversial area,” says Gerry Hyner, professor of health promotion at Purdue University and president of the Society of Prospective Medicine, a preventive-medicine group. “Health assessments aren’t going to be able to wade into that controversy and make clear recommendations.”
The same goes for mental-health issues. Because doctors can’t yet quantify the effect of problems such as anxiety or depression on physical well-being, risk calculators ask few if any psychological queries.
Psychological Queries Lacking, Critics Say
“This is the biggest hole in health assessments, and especially online assessments,” says Dr. Rick Lippin, who was corporate medical director at Arco Chemical Co. for 25 years before consulting with Internet sites. “Any questionnaire or assessment we say is comprehensive should be asking about stress levels, depression, even the balance between work and family, which is an especially important factor for working women.”
In the end, says Chikamoto, online health calculators are extracting very intimate, personal information and giving back recommendations that usually are not sharp or personal enough to motivate a change in behavior.
That might be a pretty harmless exchange, if the whole exercise were anonymous. Usually, it’s not.
Most online health sites want a name and an e-mail address; some ask about occupation, street address, even income. And although all sites have privacy statements, there’s still no guarantee those promises are honored. Earlier this year, the California Healthcare Foundation, an Oakland-based nonprofit health charity, released a study detailing numerous instances in which online health sites transferred personal information to third parties--outside firms--in direct violation of their own stated policies.
Some health sites contract with outside companies to actually administer the health assessment itself, for example. Both companies may have access to the personal information provided. In addition, the reports said, most popular sites have arrangements with advertisers, who can build profiles of users who view the ads by tagging consumers’ computers with something called a cookie, a kind of electronic fingerprint.
“This is not like a conversation with your doctor,” says Andrew Shen, a policy analyst for the nonprofit Electronic Privacy Information Center, a Washington, D.C.-based watchdog group. “On the Internet, everything is recorded and stored, and you have no control over how it’s used.”
Sites Use Profiles to Get Advertisers
Usually, it’s used for marketing. According to the California Healthcare Foundation report, almost all health sites tag visitors with a cookie, monitor their movements on the site, and collect any volunteered information, such as survey answers, subscriptions to site newsletters, and the vital stats on a health calculator. The sites then use those profiles to attract advertisers.
“We aggregate the data so advertisers can know more about the demographics of the people we reach,” says Van Brunt, of HealthCentral. “But we protect the identity of the users. We maintain a high degree of confidentiality.”
That does not prevent banner advertisers from using cookies of their own, however. Nor does it guarantee that consumer profiles will remain confidential should the health site merge or go out of business. Already this year, several failing online consumer sites have tried to sell consumer information to raise money, and the competition among consumer health sites is only getting more savage. A shakeout is coming--and soon, industry analysts say.
Shen says the relationships between Internet sites and better-known companies are not always as clear as consumers might expect.
The popular site Intelihealth.com, for example, is a subsidiary of Aetna U.S. Healthcare, one of the country’s top insurers.
“I wonder how many people who visit Intelihealth understand that,” he says.
The best protection, experts say, is to give away as little personal information as possible. And if you think you need a general assessment, or a checkup, try a doctor.
For as rushed as doctors have become, they still have one thing over electronic health-assessing software, public health researchers say.
“They can look you in the eye and explain things to you,” says Blankenbaker. “Whatever we learn online, I think the human touch is still the most important part of health care.”
