SAN FRANCISCO — It’s not yet a perfect match, but the relationship between Internet users and online health information appears to be growing serious.
And slowly but surely, more doctors and health-care professionals are seeing the value when patients empower themselves with knowledge.
Receiving a new diagnosis or helping a loved one through a health crisis can motivate even the most squeamish or technology-averse people to dive into the world of online health information. Websites also fill in when people can’t take time off work or afford the money to see a doctor.
But knowing how to get what you’re looking for without being misled, coerced by commercial interests or scared silly can be harder than it looks.
First, the good news.
“The information that’s available online, particularly on the good sites, has improved dramatically,” says Jessie Gruman, president and founder of the Center for Advancing Health, a Washington-based nonprofit that aims to increase people’s engagement in their health care.
“There is nothing like having a sense of what’s going on in your body and how this drug, procedure, surgery or diagnostic test is going to make a difference in how you feel and your ability to move around and work,” she says. “You can get information like that (online) that’s really important for your own self-confidence and your ability to talk to your clinicians.”
Most doctors are pleased when patients go online to get a general overview, Gruman says. But some still see an informed patient as a threat to their authority, and patients need to realize there are limits to the usefulness of online health searches since many sites offer similar information aimed at the largest possible audience.
“Information online is for the general public and the general case,” Gruman says “Most people fit into that. You can get solid information that’s incredibly helpful to manage those situations.”
But if your case isn’t standard, finding credible online information becomes a lot harder, and you may have to go straight to your health-care provider, she says. “If you have any quirks in your history, you might be out of luck.”
Gruman knows this lesson firsthand. A few months ago, she was alarmed when a blood-sugar test showed she was prediabetic, a condition of higher-than-normal blood sugar levels that precedes Type 2 diabetes and gives many people a chance to prevent or delay its development. But upon researching prediabetes on sites such as MayoClinic.com and WebMd, she found the advice was targeted to people who were overweight.
A survivor of four different cancers, being overweight wasn’t a factor that applied to her.
“I’m an avid exerciser and I’m really skinny,” she says. “The two things people are told to do to keep from developing diabetes are to lose weight and exercise.”
Turning away from the Internet, Gruman saw her primary-care doctor, who then referred her to an endocrinologist. The endocrinologist put her mind at ease by telling her that many people who’d had her kind of radiation therapy showed the same sign of prediabetes but didn’t go on to develop diabetes. Because there were no other red flags, the specialist said she had one less thing to worry about.
Meanwhile, a colleague of hers who didn’t hear back from his doctor for a week went online to see if other people had suffered from intense itching upon starting the same medication. Sure enough, she said, he found it was a common side effect and stopped taking the drug.
Joanna Smith, president of Healthcare Liaison, a health-care advocacy outfit in Berkeley, Calif., says the Internet is good for basics, such as learning what a urinary tract infection is. For complicated research, she uses UpToDate.com, an independent subscription service that synthesizes medical literature and is available to patients for $19.95 for seven days or $44.95 for 30 days.
As online health information gets more sophisticated, patients shouldn’t be surprised if their doctor asks them to huddle around the office computer to do a targeted search or sends them a link to watch a video explaining their health condition in the comfort of their home.
At least that’s what happens when patients visit Dr. Howard Luks, chief of sports medicine and knee replacement at Westchester Medical Center and New York Medical College in Westchester, N.Y
Contrary to what many doctors fear, Luks says his patients don’t bring in reams of paper from their Internet research. And he doesn’t worry that patients will think less of him if he visits Google.com during an office visit.
“I have two chairs at my computer: one for me and one for my patient,” he says.
Luks is both a creator and user of online content. Thanks to a robust website (howardluksmd.com) that features short videos of him casually dressed and speaking into a webcam about orthopedic problems and treatments, many of his patients are already familiar with his style by the time they reach his office. The Internet can be just as useful to him as his patients since keeping up with the hundreds of academic studies released each day isn’t possible, he says.
Luks uses Twitter, Facebook and Pinterest to communicate his ideas. He often sends patients short videos from Clear.MD, depending on their preferences.
“Physicians need to be where their patients are,” Luks says. “Their patients are online, and (they) are online on many different platforms.”
If a patient has a complicated problem, he may pose a question to colleagues on Doximity.com, a secure platform where doctors weigh in on others’ cases.
“A physician’s greatest fear about social media should not be privacy issues,” he says. “It should be that the physician down the street gets it and engages first.”
Doctors need to remember that patients burdened with pain and worry often forget much of the conversation after they leave the office, Luks says. It’s not just a heavy diagnosis like cancer that can make them too distracted to absorb any information.
“It can even be that a mention of a meniscus tear or cartilage tear in the knee will shut them down as well,” he says. “You have to be cognizant of that and support them with knowledge tools.”