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Facebook has encompassed many things in its nine-year run. From a subtler version of a dating site to a gaming platform and a messaging hub. We’ve seen Facebook and its billion-plus users play a part in influencing politics, the form advertising takes, and how retail happens. Now we’re starting to see Facebook begin to impact science and public health, and it could be Facebook’s biggest industry-changing opportunity yet.
The logic is a simple one: Everyone on Facebook, all 1 billion-plus people, will have an illness at some point in their lives. And, as Facebook’s social creatures are in the habit of doing, that mass of people will share their experience battling disease, ask questions of their friends, and field advice from outsiders. Through the bullhorn of Facebook, healthcare professionals can deliver information 24-7 about flu vaccines, the path of epidemics, and essential preventive care. The social network can influence how and when people respond to disease, and how we manage death and dying. “Facebook has this massive and powerful platform [that] can be deployed for health care,” says Dr. Eric Topol, director of the Scripps Translational Science Institute.
In his book about digital health care, Topol writes about the story of a mother who posted pictures of her sick child on Facebook. People in her network started commenting on those photos. Three, including a cousin who was a pediatric cardiologist, called to tell her her son might have Kawasaki’s disease, a rare genetic disorder. She called her doctor and told her she was on her way to the hospital because she had a “sense” her kid was really sick.
“What [else] was I going to say? Three of my Facebook friends think my kid has an extremely rare childhood auto-immune disorder which I just read about on Wikipedia, and since they all contacted me after I posted a photo of him on my wall, I’m going? It seemed … wrong!” Deborah Kogan wrote on Slate. Once she got to the hospital, she writes, she told the doctor about her Facebook-prompted visit. She claims the doc said, “You know what? I was just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook.”
This is only one story, but it does highlight the potential power of the Facebook network effect.
Last May, for example, Facebook made registering as an organ donor an official “Life Event.” Theoretically, users always had the option to tell their friends they wanted someone else to benefit from their body after they died. But publicizing that information was likely not high on the list of things people thought of sharing when they logged in. Facebook changed that, at least for a time.
About 6,000 people in 22 states registered as organ donors on the first day after the announcement was made, up from an average of about 360. That spike in registrations may have trailed off because users were not continuously reminded of this option, but the social experiment showed the influence Facebook could have on public health, say experts studying the collision between digital tools and health care.
Facebookers can already add overcoming an illness, losing weight, breaking bones or having their braces removed to their Life Events under the category “health and wellness,” but those updates provide very limited information about health.
Physicians, Topol says, don’t even know what normal, minute-by-minute blood pressure should be. That’s a problem because millions of Americans suffer from high blood pressure. But what if researchers could reach even a fraction of Facebook users who have this condition and prompt them to participate in a research study that tracked their blood pressure, along with other metrics like activity levels and heart rate through digital sensors? What if at some point in the future, there was even an option to share genetic information on your Facebook profile? With its growing cross-section of users, Facebook “could really get us an enriched data set,” Topol says.
That assumes, of course, that the data will be reliable, that Facebook will work with scientists to do research as it currently does, and that people will be willing to share personal health information given concerns about how Facebook or third parties might use their data. If you post that you have insomnia for example, would sleep medication ads suddenly pop up?
Those kinds of questions, and the cautious nature of the health care industry, have tended to keep the flow of health related data on Facebook fairly unsophisticated. Until now, Facebook has mostly served as a platform to disseminate information on the cheap. “More hospitals are on Facebook than any other social platform,” said Lee Aase, director of the Mayo Clinic Center for Social Media. Organizations use it, Aase says, to raise awareness about local blood drives, mental health services, free vaccinations, STD/HIV testing, or prenatal care.
Physicians, who you might think would love to use Facebook as a natural hub to communicate with their patients, have mostly shied away from it and other social media platforms to interact with patients because of concerns over professionalism and legal liabilities due to patient confidentiality laws.
But there are signs that the healthcare crowd is warming up to Facebook, in particular research scientists are increasingly using Facebook as a tool. Currently, there have been roughly 400 academic papers published in the last four years that mention the social network, according to a search for the word ‘Facebook’ on PubMed, a public database of biomedical and life sciences research. That’s not many, but the number of such articles published each year seems to be growing. Some of these studies are trying to tease out whether Facebook could be a valid teaching tool for dentistry, histology and continuing education, which suggests the field might be getting more comfortable with the idea of using social media more widely.
In September, researchers from the University of California, San Diego, in collaboration with Facebook’s Data Science group, published a study of 61 million Facebook users in the journal Naturethat suggested political messaging on Facebook influenced real-word voting of millions in the 2010 congressional elections. When users were told that their friends had voted, they were slightly more likely to vote themselves. Although the effect was small, “they translate into a significant numbers of votes” if extrapolated into a real-world scenario, according to an editorial published with the report. Imagine if the same could be shown for public health campaigns on Facebook? Scripps’ Topol asks.
“The leading digital doctors are really pushing the envelope on this,” says Topol. “But it’s just getting started.”
