It seems like everybody’s doing it—looking for information online about their rheumatic diseases, that is.
Just take a look at the top-10 searched conditions on WebMD in 2010. Gout was number three and lupus was number five.
If that’s not enough evidence for you, then consider this. A survey done by Pew Research Center says that 60% of Internet users look online for information about a disease. A number of rheumatologists would estimate a somewhat similar percentage within their patient mix.
“I think at least 50% of my patients have been looking up their symptoms or disease online or looking at medication profiles,” says Rebecca M. Shepherd, MD, a rheumatologist with Arthritis and Rheumatology Specialists at Lancaster General Health in Lancaster, Pa.
“Two or three out of 10 patients is a conservative estimate,” says Charles King, II, MD, chair of the ACR Committee on Rheumatologic Care, and a rheumatologist at North Mississippi Health Services in Tupelo. “I think more patients are researching Internet-based resources without necessarily telling their doctor.”
For pediatric rheumatologist Paul Rosen, MD, of the division of pediatric rheumatology, department of pediatrics at Nemours in Wilmington, Del., parents often turn to the web for help when their child’s primary care physician mentions possible lupus or arthritis and suggests that their child see a specialist.
Although you might think of only younger patients trolling the Internet, that isn’t always the case. “Usually the patients younger than 50 have done research, but so have some of the 65-year-old patients,” Dr. Shepherd says.
“Often, my older patients are the ones bringing in stacks of Internet research,” says Julie Levengood, MD, a rheumatologist at Reliant Medical Group in Worcester, Mass.
Although some rheumatology patients have limitations due to lack of computer knowledge or accessibility—or because they have difficulty using a keyboard—many seem to find their way around that by enlisting the help of family members who have computers.
So what is it that’s prompting patients to find disease information online? And how much do their searches add to—or detract from—their interactions with health professionals?
Gaining Knowledge and a Sense of Control
By searching for information online, patients find out more about their disease or condition. This can lead to a more productive appointment, says Dr. Levengood. “I’m always happy to have educated, informed, and engaged patients,” she says. “When they come in after having done some background research, we can talk more in-depth about why certain treatments may or may not be right for them.”