Online Medical Information Adds New Dimension to Patients’ Discussions with Doctors

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.”

“When patients come in having done research, it’s a sign that they are invested in their health and have substantial concerns,” says Daniel Solomon, MD, MPH, chief of the section of clinical sciences in the division of rheumatology and division of pharmacoepidemiology at Brigham and Women’s Hospital, and professor of medicine at Harvard Medical School in Boston. “I almost always find that the patient who is invested in his or her health is an easier patient to treat.”

Dr. Shepherd even finds sometimes that, when patients have done their homework, their research can point out symptoms or side effects they might not have otherwise considered.

Another important reason patients seek information online is to give themselves a sense of control over their disease, Dr. King says. “I let the patient know I am glad they ‘did their homework’ and that I do not feel threatened,” he says.

Patients also turn to the web to find information on how to cope with their disease on a daily basis, says Rebecca Petris, founder of The Dry Eye Zone in Poulsbo, Wash. On her website, which has a number of users with rheumatic diseases causing dry eyes, patients share their stories with each other. “You find understanding and compassion, and it’s such a relief. For any chronic disease, especially those involving pain, this is huge, because the psychological impact of chronic disease is tremendous, and specialists usually aren’t well equipped to support patients in that area,” Petris says.

Considering the Downsides

Despite the advantages, the Internet can be a scary, overwhelming place for people searching for health information. Dr. Rosen sometimes has parents who search for information, and what pops up is a worst-case scenario. That stops the parents from further searching because they do not want to worry themselves more.

If patients like the ones in the above scenario decide to keep reading, it can lead to skewed perception of hopelessness, Petris says. “The Internet health discussion communities often attract people who are ‘exceptions,’ people for whom standard treatments have not been successful,” she says. “If all you see are people still searching for a solution, you can too easily conclude it’s hopeless.”

There is also the risk for a good deal of misinformation online. “Asking a 65-year-old woman with a fracture to take a bisphosphonate, for example, after she has researched the medication profile online, can be very difficult,” says Dr. Shepherd. “Educating patients about the likelihood of symptoms versus the outcomes of having an untreated disease is a challenge.”

Another frustrating Internet scenario from Dr. Shepherd: “The other scenario I see frequently is that of a patient with depression and fibromyalgia, who is convinced after doing research on the Internet, that he or she has lupus or chronic Lyme disease. Educating the patient in this setting is time consuming and often fruitless.”

Helping to Guide Patients

When patients come to Dr. Rosen’s office for the first time, he will ask them what brings them in and what questions they want answered. This usually opens a discussion about what kind of information they have read online. His patients sometimes bring in copies of something they have read online and will ask his help in explaining it. Dr. King will ask patients to summarize what they have learned online and to ask him questions to help clarify any information.

“We address each of their concerns and questions one at a time,” Dr. Shepherd says. “I typically find I spend more time addressing misinformation and concerns they bring to the appointment.”

Although reviewing Internet (mis)information may take time, Dr. Solomon believes there is a useful goal that can be reached—to get patients more involved in their decision making. “It is typically a productive two-way conversation that more often produces shared decision making than when patients come in with very little knowledge of treatments,” he says.

Rheumatologists will also steer patients toward reliable websites (see sidebar below). Beyond that, they would like to continue to see the development of solid web information and digital resources for patients. “Rheumatologists must continue to be actively involved in the development of web-based content, particularly in their local communities,” Dr. King says.

“The more information I give the patient, the less likely they are to seek information from alternate sources,” Dr. Shepherd says.

Dr. Rosen would like to see more opportunities for rheumatologists to interact digitally with patients, an area where he believes healthcare is lagging behind. “People want to communicate with their doctor without having to come in to the office or use the telephone. I don’t think we’re utilizing digital communication as much as we could be,” he says.

Vanessa Caceres is a freelance medical writer in Bradenton, Florida.