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.
Directing Patients to Reliable Information
The following sites can be reliable resources for your patients to use during their Internet searches for rheumatic health information, according to the sources we interviewed.
ACR’s Patient Fact Sheets
www.rheumatology.org/practice/clinical/patients. The ACR and ARHP have prepared patient fact sheets about 30 rheumatic diseases and 12 rheumatic conditions and various medications. Some of the sheets are also available in Spanish.
