“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.”
