To better tailor treatment, search online like a patient

When doctors know what the mainstream is talking about, they can get patients to speak their minds and then recommend reputable health sites.

By — Posted Feb. 18, 2013

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If physicians want to know what patients aren't telling them, such as the reason they are not taking prescribed medications or the side effects they are experiencing, the secret may be found online.

A study posted online Jan. 16 in Pharmacoepidemiology Drug Safety said having some awareness of patients' online activities could help physicians find out how certain drugs may be affecting them, or what they are doing based on advice read online.

The study analyzed online discussions among breast cancer patients who were on aromatase inhibitors. Of the 25,256 social media posts examined, 18.2% told of at least one side effect; 12.8% mentioned discontinuing the medications, and 28.1% said they were switching to a different aromatase inhibitor.

Jun Mao, MD, the study's lead author, said the top priority for many breast cancer patients during an exam is “to know if their cancer is coming back.” So, he said, patients aren't asking doctors about their drugs and any side effects. Therefore, “the Internet has become a good resource to learn about patients' concerns,” said Dr. Mao, assistant professor in the Dept. of Family Medicine and Community Health at the Perelman School of Medicine at the University of Pennsylvania.

Dr. Mao said he realizes it's easy to suggest that physicians do more to monitor patient activity. “But, really, how much more can we do in that limited time?” he asked.

There's no way for physicians to police the Internet activities of their patients. But experts said there are strategies to ensure not only that patients are finding the best information, but also that doctors are kept informed of trends their patients may be seeing. All the strategies start with good communication and trust building.

Know what's out there

To understand what patients may see online, physicians need to think like them and do what they probably would do. For 77% of online health seekers, that would mean first visiting a search engine, such as Google, according to the Pew Internet & American Life Project.

“If you really want to know what people are reading about, think about what they would write” in a search engine, said Wendy Sue Swanson, MD, a Seattle pediatrician who writes the blog Seattle Mama Doc.

She said she does not discourage patients from going online, but tells them to think carefully about what they are doing. The problem is, “We go online, and 30 clicks later, we think we learned something but don't know where it came from,” she said. Physicians and patients should keep trails of the sites they visit and what they find to see where the information is originating.

When a physician knows what information is being discussed by the mainstream, they can speak to those concerns directly and better recognize when a patient is spending time on sites of questionable authority. By exploring some of the sites, physicians can develop a list of recommended online resources they can share with patients.

Malcolm Butler, MD, medical director for Columbia Valley Community Health, a family practice in Washington state, said he usually can tell when patients have accessed bad information online by hearing how they talk to him. He said he has tried to counteract patients searching randomly for health information by creating an environment that makes patients feel comfortable telling him anything. Part of maintaining that environment is to not disparage patients when they share information, he said.

77% of online health seekers start by going first to a search engine.

“My job is to help clarify in a way that isn't terribly paternalistic or disparaging, but just to clarify that it's my understanding that there's no science behind that,” he said.

Physician-sanctioned sites

A University of California, Davis, study published online May 10, 2012, in the Journal of Health Communication found that patients don't consult the Internet because of a mistrust in their physicians. In fact, their doctors are the most trusted source of information. Many patients go to the Internet to seek information they plan to share with their physicians.

A lot of the confusion and anxiety patients feel about the information they find online can be eliminated when physicians recommend places for the patients to go, said Jock Putney, CEO of WellFX, a social platform that connects patients to physicians and to one another.

When patients can connect with one another on a physician-sanctioned platform, doctors can see what patients are talking about, and patients can visit sites their physicians trust, he said.

Dr. Mao said that without knowing where patients are going, it might be hard for a physician to find discussions specific to a certain drug and its side effects. Among the 25,256 social media posts analyzed for his study, 18% mentioned side effects. The discussions were there, but often buried. He said physicians could benefit from a platform that would crawl the Internet and create reports of trending topics of conversation. To his knowledge, this technology does not yet exist on a consumer level.

Dr. Butler agrees that it will be helpful to get patients to physician-sanctioned sites. But if they go elsewhere and believe online chatter about information provided by their physician, “what that says to me is you have a relationship problem,” he said.

“When something like that comes along, in my worldview, the thing I first go to is what can I do to help them trust me more. Instead of going online, the first thing they want to do is get in touch with me.”

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External links

“Online discussion of drug side effects and discontinuation among breast cancer survivors,” Pharmacoepidemiology Drug Safety, published online Jan. 16 (link)

“The Prepared Patient: Information Seeking of Online Support Group Members Before Their Medical Appointments,” Journal of Health Communication, published online May 10, 2012 (link)

“Health Online 2013,” Pew Internet & American Life Project, Jan. 15 (link)

Seattle Mama Doc blog, Seattle Children's Hospital (link)

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