There are many sites available that are run by patients or others with an interest. The physician should look at these closely before adding them to any suggested social media list. Physicians should review what is being said, the background of the people involved, and if there are likely to be any ulterior motives driving the content.
Red Flags?
While little research has been done on red-flag indicators that patients have gotten bad information, some things should at least raise the index of suspicion.
“I have had people come to me saying that they stopped taking their medicine after they found out on the Internet that drinking green tea four times a day would cure whatever it was they had,” says Dr. Collins. “If a patient has done unusual things with their medications or is trying alternative treatments that have no scientific backing, I will ask where they are getting their information.”
Dr. Collins doesn’t think that we are yet to the point where a physician should ask for a list of social media that patients are accessing along with their medication list at every appointment. He does suggest asking patients open-ended questions about whether they have read anything online they’d like to talk about. For many of the outlets, there is a certain amount of self-policing that goes along within the group. Participants are not hesitant to confront those who are blatantly trying to push their own agendas.
“Anytime you are on the Internet, you are going to get a wide variety of people and a wide spectrum of both good and bad information,” says Trocchio. “Our patients are vocal and there is good debate over the usefulness of alternative treatments that are presented. Bad information tends to get weeded out quickly because of the substantial conversations we have on our social media sites.”
“With such a varied group, problems are usually taken care of without much intervention from the owners,” says Karrie Sundbom, digital marketing manager for Molly’s Fund Fighting Lupus, in Portland Ore. “Someone comes in saying that the antiinflammatory diet cured their lupus, others will chime in about how lupus is a very individualized disease and not everything works well with all people.”
The bottom line is that social media is playing a more important role in the life and treatment of patients with all kinds of diseases. Physicians should increase their knowledge of what is out there and help patients get connected with resources that are giving out good and scientifically sound information.
