Medical information is exchanged all day, every day on social media networks. Many times it collides with the facts of medical research.
Pediatric oncologist Dr. Justin Baker can usually tell when some new “cure” for cancer is making the rounds on social media. He starts to get desperate questions from parents about a new technique or a new drug or a new surgery. Every time, he tells his patients he will look into it – and he does – knowing all too well the odds are overwhelming that it will end in more heartbreak for the family.
Baker, who is chief of the Division of Quality of Life and Palliative Care at St. Jude Children’s Research Hospital in Memphis, Tennessee, works with some of the most seriously ill children in the country. He tells every new family that he will do whatever it takes to help their child, and that he works on a team with the top science and medicine experts in pediatric cancer to constantly look for cures. But he knows that eventually, there will be a Facebook post or a blog or a tweet claiming to have something better.
“In the context of medicine, social media has, unfortunately, given incredible strength to opinion and a very loud voice to the one,” Baker says. “It’s almost never grounded in data. It’s founded in a personal story or in hope for a cure that does not exist.”
Baker’s experience is played out day after day, appointment after appointment, in hospitals and doctors’ offices everywhere. A patient demands a medication that helped a Facebook friend’s neighbor, or they refuse treatment because a celebrity tweeted about the latest botanical oil to replace medical intervention.
It’s not surprising, considering the reach of social media in everyday life. A 2016 report by the Pew Research Foundation found that 68 percent of all U.S. adults are Facebook users, followed by Instagram (28 percent), Pinterest (25 percent) and Twitter (21 percent). Information is exchanged all day, every day and many times it collides with the facts of medical research.
Social media allows the introduction of these ideas and then they are disseminated as if they’re fact, not speculation.
One of the most public illustrations of this is the anti-vaccine movement on social media. Despite overwhelming scientific evidence of the safety and necessity of vaccinations, a small but growing number of parents are refusing shots for their children – and telling everyone about it across social media. Facebook has dozens of anti-vaccination groups, with anywhere from a few hundred members to tens of thousands.
Parents in these groups often share lengthy stories claiming vaccines cause autism, despite no evidence other than a retracted British study to support that assertion. Others tell of refusing new vaccines on the market because there isn’t enough evidence of their safety. Another common thread in these groups is that vaccines were developed to make money for the health care industry, not to protect the population.
“There is always something being blamed on vaccines in these online groups – autism, neurological problems, even death,” says Dr. Dean Blumberg, chief of pediatric infectious diseases at University of California Davis Children’s Hospital. “Social media allows the introduction of these ideas and then they are disseminated as if they’re fact, not speculation.”
This vast proliferation of misinformation has far-reaching consequences beyond the digital world. A patient may lose trust in a doctor who won’t go along with the latest “cure” being promoted on social media.
Likewise, a physician practice may have a policy against treating unvaccinated children, leaving those families to find care elsewhere. But of course, the most detrimental effect is on patient health.
In the case of vaccinations, that was made clear during a 2015 outbreak of measles that started at Disneyland and eventually sickened 147 people in six states, Mexico and Canada. A study in the journal Pediatrics determined the measles virus was able to spread because of unvaccinated visitors to the park. The whole episode led to a new California law tightening the rules for vaccine exemptions, and Blumberg and other health care providers hoped it also would lead to new faith in immunizations.
“We hoped there would be changing attitudes,” he says. “Instead, from what I saw in some of the anti-vaccination groups, it was people saying ‘So what? A handful of people got a fever and a rash. People are making a big deal of out nothing.’ Unfortunately, you can’t talk to them about how serious measles is worldwide. It’s really sad.”
In the face of so much misinformation on social media, it’s tempting for patients and health care providers to just avoid it altogether. But doing so leaves the power of social media in the hands of the people who promote misinformation, and the people who believe it and spread it.
By now, most hospitals and physician practices have a social media presence. It may be a robust site with new posts several times a day that encourage dialogue, or a small presence that gets updated a few times a month.
The advantage for hospitals that have a social media presence is they can use it to drive the conversation where they want it to go, says Dan Hinmon, community director for the Mayo Clinic Social Media Network. His platform offers resources and interactive communities for health care professionals and communicators.
For Mayo, it’s just one piece of its well-known social media presence, which includes 1 million Facebook likes, 1.7 million Twitter followers, 103,000 LinkedIn followers and 44,000 Instagram followers. It benefits from the brand recognition of a major health care center, and from a strategy that promotes easy-to-digest content about topics that are important to the public. For example, topics posted on a recent afternoon ranged from teething babies to dementia to the use of melatonin.
Hinmon says that in his experience, social and digital media have quickly become the third-biggest influencers of how a patient chooses where to get treatment, behind the best insurance value and where the patient’s physician recommends.
“If I am a patient, I am going to see if my physician is engaged in social media and what the hospital is doing on social media. I am also very interested in what other patients say about him or her on their own social platforms,” Hinmon says. “That’s one of the reasons hospitals got more engaged in social media. It gave physicians and hospitals the chance to be part of those discussions, influence those decisions, and respond to some of the misinformation out there”
In the decade or so since social media became part of the mainstream, Hinmon says the trend has turned toward more community engagement, rather than simply posting events or articles. This gives patients a chance to build a relationship with an organization or a physician, and perhaps choose them for a medical home.
“Social media is the way now to connect in significant ways with patients,” Hinmon says. “It is amazing because of its two-way communication potential. The mindset is shifting from broadcasting messages to connecting with communities in real time, two-way conversation. That has become more and more and more valuable. It is hard to find any hospital not doing Facebook and Twitter. It’s really become embraced as a valuable part of communicating with the patient and the community.”
It is relatively easy to engage with social media under the name of a hospital or even a large medical group. They typically have staff to assist with the posting, ensuring it meets brand and professional guidelines. It’s much different doing it as an individual physician. A seemingly innocuous post about a rough night in the ER could quickly become a privacy violation or damage the hospital’s reputation.
In a 2017 study by the Journal of Medical Information Research, 54 percent of 1,628 pediatric residents surveyed reported seeing posts that made derogatory remarks about patients. Additionally, 40 percent said they were unaware of their institution’s policy on social media.
That’s why it’s essential to develop a strategic plan and enforce guidelines, says Krysta Privoznik, social media specialist for Blue Cross and Blue Shield Plans in Illinois, Montana, New Mexico, Oklahoma and Texas. She counsels medical executives on how to use social media to raise the visibility of their company, drive awareness around important topics, and build an authentic online reputation for themselves while also avoiding some of the many pitfalls.
“I’ve provided training to people who haven’t touched their social media platform out of fear. They were afraid of what to say and how to say it,” she says. “I coach them through a crawl, walk, run approach and provide tips, tricks, guardrails and suggestions. It helps put them at ease when I show my support every step of the way.”
Perhaps most importantly, Privoznik tells them she will be monitoring what people say to them or about them, in addition to everything they post under their personal profile. She advises all organizations to come up with a monitoring plan that suits and protects their organization and its employees.
“Much of an executive’s social media success depends on up-front planning. Have a good strategy in place from an organizational perspective before you start training,” she says. “And prior to anything, have honest conversations with your company’s leadership – ask questions, listen, identify opportunities – to determine whether the executive is a good fit for social media. The fast-paced, cluttered environment is not for everyone and that’s OK too.”
Despite the risks and misinformation, Dr. Baker refuses to let the negative aspects of social media stop him from being a prolific user. He regularly tweets from conferences, or posts interesting articles to Facebook. He does have a few ironclad rules: 1) He will not accept friend requests from active patients and their families, and 2) He always keeps his posts positive. That can be difficult for someone who spends his days working with critically and often terminally ill children.
“I think of my relationship with social media as advocating for those things that are very important to me and to our patient population,” he says. “If there is an important story that is somewhat inspirational, I try to share that. Or if something happens at work that’s remarkable, I try to share that. I see myself as an advocate and promoter of the good in health care. I try to advocate through inspiration, rather than by shining a light on the negative.”