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When Facebook Is Your Medical Record - Pacific Standard

When Facebook Is Your Medical Record

Emerging research suggests kids' social network postings reflect their real-life behavior. Should that information be used in their medical care?
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Not long before some teenagers who'd been bullied on MySpace and Facebook started committing suicide in 2006, a doctor of adolescent medicine named Megan Moreno began hearing from her patients that social networking sites were making them sick. One girl started getting stomachaches after peers posted photos of her on MySpace. Another worried that the sexual references on her boyfriend's profile meant she'd have to do things she didn't feel ready for.

Moreno was troubled but intrigued: If MySpace, and more recently, Facebook, could so powerfully influence a teen's health for the worse, might the same information on the sites that was making teens ill — the prolific reports on their moods, drinking, drug use and sex lives — be harnessed to promote well-being?

Moreno got some firsthand, if anecdotal, evidence after she asked an especially reticent patient — a 16-year-old boy who suffered from headaches but insisted at each doctor's visit that he wasn't depressed — if they could look, together, at his MySpace page. "He had a lot of song lyrics on his page about depression and disclosures of pot use," says Moreno, an assistant professor at the University of Wisconsin-Madison. "There were references to him being a soccer player — which he never talked about — so we asked him what kind of player would he be if he were high and depressed. We figured out a plan to cut down his pot use, started him on an antidepressant and got him to see the connection between his pot use and his depression.

"Once he got that it was making the depression worse, he was really motivated to quit. His team went on to finals; he got most-improved player."

Moreno, of course, is hardly the only doctor interested in using social networking sites to improve people's health. Teens are a popular audience for these efforts, not only because they are among the least likely people to see a doctor, but because they use the sites voraciously (nearly three-quarters of teens and young adults are on a social networking site, according to the Pew Internet & American Life Project) and talk there about the very behaviors that are likely to put them in danger. But most medical efforts on the sites — namely health department ads and product profiles — are self-selecting, requiring users to deliberately seek out the medical information they "friend" or "like." In contrast, Moreno, in her research, is going straight to the sites' users — in essence taking medical histories via their photos and status updates and asking a provocative question: Is what you're doing online a reflection of your health offline?

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Her early findings suggest it is. Research that Moreno presented at the Pediatric Academic Societies meeting this spring showed college freshmen with especially racy displays on Facebook (racy being "anything you wouldn't see at the beach," she says) scored higher on a survey designed to measure intent to have sex for the first time than those with more reserved content. While she still has to compare specific online references to stress, violence and drug use to experience of those things offline, early data Moreno is collecting as part of a $220,000 National Institutes of Health-funded study suggests that 16- to 20-year-olds' alcohol references on Facebook square with their real drinking habits. And research presented by Katie Egan, a Wisconsin nursing student who is collaborating with Moreno, found that the prevalence of stress references on students' Facebook pages lines up with survey data on the extent of stress among college students in general.

Though her results are scientifically important, Moreno is navigating complex ethical terrain. In 2008, Moreno and two colleagues mapped out a kind of how-to guide in Pediatrics, arguing that social networking sites shouldn't be treated differently than any other research venue. Profiles set as "public" can't be reasonably thought of by their owners as private, they wrote, and permission to observe their content need only be sought if a scientist will be communicating with the owners or asking them to answer surveys.

But even if profile information accurately portrays a person, should doctors or college dormitory resident advisers make a habit of parsing their charges' profiles for signs of trouble? Should government agencies target specific users whose profiles suggest they're addicted to cigarettes or alcohol, or whose wild weekend might call for an STD test?

Egan was scheduled to conduct focus groups with college students late this year, asking them how they'd feel about being approached by a resident assistant who saw something on their profile that concerned them. But some doctors are wary of looking at patients' profiles, and not just because in many cases they'd have to "friend" them and therefore expose their own lives. The unannounced use of social media profiles "seems outside the bounds of the compact that exists" between physician and patient, says Dr. Sachin Jain, who wrote about friending patients last year in the New England Journal of Medicine. (Moreno says she only "occasionally" looks at her patients' profiles and always with permission.)

With the possible exceptions of mental health care, in which a doctor might see in a patient's status updates or photos signs of looming danger, or in pediatric care, when he says consent to look at a profile should be made jointly with kids and their parents, Jain doubts a profile review has "therapeutic value." "There's this whole business of proactively seeking information about your patients — it's really quite problematic," Jain says. "It raises equity issues, it raises validity issues. Occasionally people get curious about patients and Google them, sometimes finding out clinically useful information, sometimes finding information that's irrelevant and potentially detrimental to the physician-patient relationship. We don't perform laboratory investigations or radiographic studies unless the patient knows what we're doing and why we're doing it. Including Googling and Facebook as part of your surveillance of patients strikes me as intrusive."

Indeed, much of Moreno's research these days involves probing teens' and young adults' feelings about being sought out via social networking sites for health outreach. A $37,000 NIH-funded study is testing whether Facebook is an effective medium through which to screen female college freshmen for alcohol use. But the study is also asking participants how they feel about having their public profiles viewed by researchers. So far, Moreno says, participants seem annoyed that profiles they thought were private turned out to be public.

For a study she published in 2009, Moreno set up a "Dr. Meg" profile on MySpace, and then e-mailed teens who had publicly accessible profiles, explaining that as a doctor, she wondered if their posting sexual and other references was wise. She also noted that they might be at risk of contracting a sexually transmitted disease. The e-mail included a link to her university bio and another to free STD testing. Sexual references dropped by 13 percent among those who received the e-mail when she checked the profiles three months later (compared to 5 percent among those who didn't get it), and 10 percent who had received the e-mail switched their settings to private (as had 7 percent who hadn't gotten the note). Few people e-mailed back. Of those who did, half said they didn't realize strangers could be looking at their profiles.

"The other half," she notes, "said, 'Bugger off.'"

Ethics questions notwithstanding, there seems to be no legal impediment that would block doctors from looking at their patients' public social networking profiles. A MySpace spokeswoman said the company had no comment on the use of its site for health research or promotion. In a written statement, Facebook said that so long as researchers abide by the site's terms of service and privacy policy and obtained the consent of study participants, it "welcome[d] any organization that wants to promote health issues."

But there are real questions about the practicality of using those profiles.

Dr. Michael Rich, a pediatrician and director of Harvard's Center for Media and Child Health who calls himself "the mediatrician," notes that the privacy and consent standards for research are much more stringent than they might be for daily medical practice. But he questions how realistic it would be for doctors to use profile information.

"Are you going to take every kid with a beer can on their profile and do an intervention on them? It's very dicey to make the leap from a picture to a behavior, and it's certainly not cost effective," he says. "Where's the time going to come from to cruise these sites and build a screening and an intervention around that?"

Still, there is an implicit assumption that a correlation between online and offline behavior exists and is useful information, acknowledges Ann Aikin, a social media strategist at the Centers for Disease Control and Prevention. The CDC buys ads on Facebook that are generated based on a person's demographic profile information and interests on the site. While targeted according to profile information, Aikin says, the ads are "expected" by social network users and therefore acceptable — unlike, she says, a government agency monitoring a site's "wall" conversations and promoting health behaviors based on their content.

Yet under the passive model by which public health agencies have tried to reach out, the results have been disappointing. In 2008, the New York City Department of Health and Mental Hygiene launched NYC Teen Mindspace, a MySpace page where teens could "friend" and follow the stories of avatars who were battling depression, stress and coping with dating violence. But the site has received only 113,000 page views. "You'd hope for more," admits Jeffrey Escoffier, the department's director of health media and marketing. And since the agency added the phone number and e-mail for the mental health hotline LifeNet to the site in 2009, only 146 people have called or written for help.

City health officials have decided to repackage the Mindspace information on a dedicated teen health site, accessible from public school computers (MySpace and Facebook are typically blocked) and incorporate it into classroom discussions about mental health.

If a happy medium exists between respecting privacy and capitalizing on the health information social network users inevitably reveal, it likely will involve the use of existing network connections and the trust they have developed, says Jason Bonander, director of informatics at the CDC's Chronic Disease Center. The agency's campaign to increase awareness of HIV among young African Americans is trying to reach the Facebook and Twitter followers of actor Jamie Foxx and rapper Ludacris, many of whom reflect the CDC's target audience of 18- to 24-year-olds, by encouraging the celebrities to send out CDC messages.

"If you identify an individual at risk for something, they're sitting within a social network, and some part of that social network likely has the same risks," Moreno says. "If we really could capture that idea that you could reach out on a website, not just to an individual but to their social network, that would be an unbelievable way to think about public health."

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