Digital Diagnosis Sorting Good Medical Advice from Bad on the Internet

Dr. Bruce Auerbach knows a lot about medicine. He wouldn’t be president of the Mass. Medical Society if he didn’t.

But he doesn’t know nearly as much about legal contracts — and he doesn’t pretend to.

“If I’m about to enter into a contract and I read a book about contracts, I don’t call my attorney and tell him or her how to write my contract up,” said Auerbach, chief of Emergency and Ambulatory Services at Sturdy Memorial Hospital in Attleboro. “I trust he’s gained something from years of education, training, and the experience he’s absorbed during his career.

“Now,” he continued, “if my having that knowledge makes me more capable of communicating what my needs are and understanding what my responsibilities might be under that contract, that’s good, but it still doesn’t make me capable of writing it.”

Most people would agree that makes sense; after all, lawyers spend years honing their craft to master the intricacies of legal documents. And there’s a reason why people hire attorneys for such matters; after all, one amateurish mistake could nullify the contract or other document, possibly with costly consequences.

So why, doctors like Auerbach say, do people with no medical background think they can diagnose and treat themselves based on what they read? There has always been a segment of the patient population prone to such overconfidence, but the Internet has changed the landscape completely, making literally millions of pages of medical advice just a mouse click away — much of it unverified by clinical evidence or trials.

“There’s a reason we spend four or more years in college, four more years in medical school, between three and 10 in residency and possibly fellowships, in addition to our years in practice,” he noted.

“As smart as someone is who’s reading about a particular disease that they have or think they have, it does not make them as knowledgeable as someone who has spent all those years being educated about the human body, how diseases interact with the body, and how multiple diseases and treatments may interact with each other. That’s not an arrogant statement; that’s reality.”

Of course, Auerbach added, patients who do some research are often better able to explain what’s bothering them and better able to understand a doctor’s diagnosis and what treatment regimen is required, especially when it comes to chronic diseases that must be managed over the long term. “But it shouldn’t make you feel that you don’t need to get information from a trained professional.”

But the danger of using the Internet as a doctor extends beyond not getting the needed advice of a real doctor. There’s also the risk of acting on bad advice, such as taking a remedy that, as Auerbach noted, reacts dangerously with a certain patient’s physical makeup and other medications.

“There are a lot of fringe people out there who have all kinds of weird ideas, and I don’t find them to be particularly helpful,” said Dr. Michael Rothberg, an internist at Baystate Medical Center. “They either claim that what a doctor is telling you is bad, or that some supplement is going to cure you, and often there’s no evidence to support what they’re saying. It’s hard for a lay person to figure it out.”

Yet, at a time when public skepticism of the medical establishment is higher than in the past, and when individuals absorb any number of medical claims online, they’re certainly trying to figure it out. This month, The Healthcare News examines what risks they’re taking, and how to determine which Internet advice is backed up by science — and which isn’t.

Anxiety Attack

Rothberg conceded that the Internet is the easiest, most accessible place for people to go when they’re seeking information on practically any topic, health issues included. And some people, he said, find the online world more approachable than a doctor when it’s difficult to get an appointment or they’re embarrassed about a medical concern.

But there’s plenty of inaccurate or conflicting information out there, he said, so Web surfers run the risk of either acting on wrong advice from the first site they visit or becoming confused and frustrated the more sites they peruse.

And there’s yet another downside to self-diagnosis online. “People come in with a lot of anxiety because they fit the description of a disease, when in fact they have nothing like what they’ve read about,” Rothberg said. “It’s a needless anxiety, and the doctor has to reassure them, which creates extra work.”

That’s why, he said, it’s best to see a doctor for a complaint before immersing oneself in online information — especially considering that a disease can manifest in different ways from person to person.

“For the most part, if you’re concerned about something, see a doctor. That goes for doctors as well; it’s very difficult to diagnose yourself. Sometimes people who have strange symptoms will discuss them on various sites. You might be able to bring a doctor additional ideas from that, but searching the Internet, in my experience, most of the time doesn’t pan out.”

Rothberg doesn’t dismiss the value of Internet research, however; he just believes it’s best conducted after being diagnosed by a flesh-and-blood doctor.

“That bonus research on their own may be helpful after seeing a doctor, but if you do it beforehand, you might come in with lots of data about rare diseases that you don’t have,” he said. “Or, you might read that chest pain could be a symptom of heart disease, but that only applies to certain kinds of chest pains, and we don’t expect patients to distinguish them.

“That’s what the diagnostic interview is for: you can’t tell from reading on a diagnostic Web site what kind of chest pain you have,” Rothberg continued. “It depends on what your symptoms are, but those have to be taken in the context of other factors, such as your age and what other risk factors you have. A healthy 25-year-old and a 65-year-old smoker with hypertension have different chances of having a certain disease based on a symptom.”

Human Touch

Many providers of online medical advice echo the need to seek a doctor’s diagnosis in person. Dr. Kent Walker, an osteopathic physician and surgeon in Oregon, launched the informational site www.askdrwalker.com in response to what he sees as a bevy of misinformation online, seeking to screen questionable Web sites and link to those he finds reliable. But even the most helpful sites are no substitute for the real thing, he writes.

“It is impossible to determine the credentials of anyone on the Internet who claims to be a physician,” Walker argues. “A professional-looking Web site is fairly inexpensive and is within the budget of any would-be snake-oil salesman. Beware of anyone who is claiming to market something that is too good to be true.

“Face it, love them or hate them, pharmaceutical companies are huge companies that make money by finding cures for what ails you,” he notes. “If there was a miracle cure for something, they would leap on it and market it widely. Our advice? If you feel that you or your loved ones require medical attention, see your family physician as soon as possible.”

Dr. Rod Moser, a primary care physician in California, blogs about health matters for www.webmd.com, but he too recognizes the diagnostic limitations of the Internet.

Suppose, he suggests, a patient sees a doctor — one he’s never met before — about a mysterious rash. Now imagine that doctor blindfolds himself, has his hands tied behind his back, and hears the patient’s story, but is unable to interrupt to speak or ask questions.

“He is prohibited from carrying on a live, one-on-one, real-time conversation,” Moser writes. “He cannot hear your voice for subtle clues of anxiety, fear, or other emotions. He cannot see you raise an eyebrow, look puzzled, or angry. Yes, he can ask you a few questions, but he will not get the answer for a day or so. This, folks, is the Internet when it comes to diagnosing. We have no ability to use all of the five senses bestowed to us by God.”

Similar advice applies to purchasing medicine online. Web-based pharmacies offer convenience, but often at a price; some hawk counterfeit drugs that act like FDA-approved products, but have not been tested for safety and efficacy.

According to www.rxlist.com, an online source for drug information, safe sites should always be located in the U.S. and be licensed by the state board of pharmacy where the Web site is operating (www.nabp.info provides a list of state boards of pharmacy).

They should also have a licensed pharmacist available to answer questions, and — most important — require a prescription from the patient’s doctor or another health professional who is licensed to prescribe medicines.

Reliable Sources

Auerbach was quick to give the Internet credit for encouraging a more-educated patient population, even when some of the information is dubious.

“We believe that the better-informed patients are, the greater likelihood that we will have a productive conversation with them, which frequently translates to a better understanding of their disease and compliance with our recommendations,” he said, “so in the final analysis, patients’ ability to get this information from the Web can be very good.”

But he does not downplay the importance of seeking reliable data, and that’s where many patients are tripped up.

“There are a lot of people throwing stuff out there, and the Internet has very few screening mechanisms for reliability and credibility,” he said. “It is dependent on the integrity and credibility of the entity putting information out there as to its accuracy, whether it has been vetted, and whether there’s any basis in clinical research and evidence.”

Auerbach said people should certainly seek information, but from reliable sources, such as state medical society Web sites that have clinical information; disease-specific organizations, like the American Diabetes Assoc., the Multiple Sclerosis Society, and the American Heart Assoc.; government departments of public health and the Centers for Disease Control and Prevention; and academic medical centers and teaching institutions.

Organizations that fall into these categories, he told The Healthcare News, have an obligation to put out credible, vetted information, and many of them tend to rank high on Google and other search engines, so people shouldn’t have much difficulty tracking down the data they need from reliable sources.

Rothberg said some online sources help patients navigate what’s going on at the research frontiers of their illness, and even provide information on participating in clinical trials, if they are so inclined.

“Once you have a diagnosis, the Internet is a fantastic place to learn more about it,” he said. “But you need to stick with reputable sources.”

As for whether doctors mind when patients arrive armed with data, Auerbach said that depends on the patient’s attitude toward their own research.

“When a patient comes in with a preconceived or predetermined notion of what they have and what needs to be done based on what they’ve read on a Web site, that can be problematic for a physician,” he said, “because you’re faced not only with trying to help them figure out what’s wrong, but also with persuading them that they have something other than what they’re convinced they have.”

Still, he said, if patients gather information with the idea of having an open-minded conversation with their doctor, then physicians tend to appreciate the effort, knowing that such a patient will be better able to understand very complicated issues or technical terminology.

“When I’m talking about options for treating someone for a particular disease, I know this is not completely new information that I’m giving,” he said, and that can lead to more productive back-and-forth exchanges.

A Matter of Time

Rothberg added that, because of the time constraints on today’s typical doctor visit, many physicians are relieved that patients are able to quickly access information.

“It’s really incredible how little patients understand about their diseases,” he said. “Physicians are so stressed and have so little time, and the way the system is set up, they’re not paid to teach patients about their disease. And if you don’t understand the disease, it’s much harder to take care of yourself. If you don’t understand why you’re taking a particular medicine, you might not be motivated to stick with it.”

That is one main reason why understanding one’s own disease management is better than unthinking compliance, Rothberg said.

“It’s important that people understand why they should take this medicine, what benefits it offers, what risks are associated with it, and what the risks might be if they don’t take the medicine,” he explained.

“There are a lot of opportunities to read these things at your own pace in language you can understand, on the Internet, so that’s really a bonus. But you have to know what you have first, and for that part you need to go to your doctor.”

And that, physicians say, has been true long before anyone knew how to Google.