A healthy medium ~ The art of balancing social media and health care
When Karen Thurston Chavez learned her 1-year-old son, William, had a heart defect, she envisioned a worst-case scenario.
"My immediate thought was, ‘I'm going to lose him,' " she says.
Her first online searches for information about William's heart condition didn't help; they turned up horror stories of other children who had lungs removed.
Then Thurston Chavez, who lives in Tallahassee and runs a business called Sixth Generation Communications, found a Georgia mom whose online stories and pictures of her young son's battle with the same condition and successful treatment gave her hope.
"Here was Kara with Quinn and they were living a regular life."
Now, William is an active but shy kindergartner who will celebrate his sixth birthday this month. After undergoing surgery at UF's Congenital Heart Center at age 2, he has been free from the exhaustion and illness that plagued his earliest years. He returns to the center for annual visits.
Thurston Chavez says her friendship with Kara was a vital source of support.
"That Kara in Georgia took the time to e-mail me back and share the pictures of her son after surgery and share her experience just made a huge, huge difference," Thurston Chavez says.
Today, Thurston Chavez helps spread hope to other families by managing numerous Web sites and a Twitter account focused on congenital heart disease. She runs a home page for Broken Hearts of the Big Bend, a support organization she co-founded for families and individuals dealing with congenital heart disease, plus Yahoo and Facebook pages dedicated to the group.
She also started a Facebook "Fan Page" in honor of Mark Bleiweis, M.D., an assistant professor of thoracic and cardiovascular surgery at UF and director of the Congenital Heart Center. Bleiweis is the man who operated on William's heart. Since then, Bleiweis has created his own Facebook page, where he connects with many of his patients.
Thurston Chavez says Web sites like the ones she manages are important because they foster relationships between and provide information for people whose lives are affected by congenital heart disease. Because most of the families involved in Broken Hearts of the Big Bend bring their children to Shands at UF for treatment, for example, they can provide valuable insight on the quality of their experiences to parents with newly diagnosed children.
"A lot of people think ‘Oh, I've got to go to Boston, or I've got to go to Philadelphia ... for care,'" she says, "and they don't realize that Shands is just a couple hours away. "They like being able to see that other families have had success with this particular center."
A new tool for health care
Thurston Chavez is not alone in using social media to help others navigate the complex world of health and health care. A Web site called PatientsLikeMe allows people with certain medical conditions to post personal and health information online then connect with others who have the same condition. Caring Bridge is a site that allows patients and their families to post updates, keeping friends and family abreast of improvements and setbacks. The national Centers for Disease Control and Prevention has embraced outlets such as Twitter, YouTube, Facebook and Second Life to spread health messages to its audience of 300 million people. Jay Bernhardt, Ph.D., M.P.H., director of the CDC's National Center for Health Marketing, says using these tools is a necessity for the CDC.
"Our main goal is to try to present our information, our science, our interventions to the populations we're serving in the most user-centered way we can. So we want our health information to be presented to people where, when and how they want it."
David Guzick, M.D., Ph.D., UF's senior vice president for health affairs and president of the UF&Shands Health System, says social media has the potential to improve care for patients.
"We've long known that medicine is not only a science but an art. Part of that art consists of knowing how to encourage effective communication between doctor and patient," he said. "Done properly, that communication is a two-way dialogue. Social media in its many forms provides new opportunities for fostering that dialogue, which ultimately can lead to improved health outcomes.
"Social media has benefits in other realms as well. Researchers may share new ideas with each other that inspire innovative approaches to health care. And students may access or exchange information that helps them learn more effectively."
Potential pitfalls
But Thurston Chavez cautions that the Internet can be a dangerous place for people seeking information about complicated health conditions, such as congenital heart disease.
"There are lots of blogs with misinformation," she says. "If you stick with the university sites and you stick with the hospital sites — I eventually dug into PubMed and some of the other medical journal subscription services to look up journal articles — then you can be pretty safe with the information that you're getting."
She emphasizes that parents should always consult their child's doctor about information they find online and to remember that stories of other people's experiences may not match up with their own.
"On Facebook and Twitter our information tends to be more personal, so it's experience-based," she says of the social-media efforts she spearheads. "You just have to learn to take that for what it is and you have to learn that every kid's defect is different, and so (everyone is) going to react differently."
Health-care providers can get in trouble using social media, too. The Health Insurance Portability and Accountability Act, known as HIPAA, still applies in social media formats, as do other laws governing the disclosure of private information.
Susan Blair, UF's chief privacy officer, says health-care providers who refer to patients in blogs or Facebook posts sometimes think they've sufficiently "de-personalized" the information. But that's not always true.
"Even if you think you've de-identified, generally we can figure out who it is," Blair said during a seminar on social media held at the Levin College of Law in January. "With a blog for example, it would be date and time (stamped), you might mention where you work, you might mention the great surgery that you did that day and the poor outcome for the patient, hopefully not because you've done something wrong during the surgery."
Presenters at the January social media seminar emphasized that the law lags behind the use and development of social media. While no one knows for sure how these kinds of issues would play out in court cases, Lyrissa Lidsky, J.D., a professor of law at UF's law school, said institutions could potentially be held liable for an employee's posts revealing protected health information made on the providers' official sites, even if the employee did so independently.
These potential pitfalls have prompted some organizations, including UF's College of Medicine, to create policies governing employees' and students' use of social media outlets. The College of Medicine's policy states that students and employees could face legal and academic penalties for some things, such as posting someone else's protected academic or health information online or pretending to represent UF officially. It also warns them against putting pictures depicting things like sexual promiscuity or substance abuse online. The other Health Science Center colleges are considering similar policies.
Following Neal
Last fall, Paul Doering, M.S., a distinguished service professor in the College of Pharmacy, and Tom Munyer, M.S., a clinical associate professor, introduced their Pharmacotherapy IV class to "Neal Beal." A fictional senior citizen developed by Scott Blades, the college's coordinator of instructional design, Neal is a military veteran who expresses his health woes and complaints about his health care on Twitter, in video messages and in simulated voicemails accessible online. Occasionally, he makes surprise class appearances.
Pharmacy students such as Sara Neissari spent the semester frequently checking Twitter for Neal's updates and preparing oral and written responses to his comments.
"It kind of brings the classroom to life," says Neissari, a third-year pharmacy student.
She says the variety of communication channels and frequent messages from Neal were a good approximation of what it's like to work with real patients.
"No patient is the exact same (as another)," Neissari says, "so some people will communicate by e-mail, some will come in to see you, some will leave a voice message and some will be communicating through someone else."
The fall 2009 semester was the first time social media tools were used to make the students' experiences with a simulated patient last throughout the course.
Online reviews: fair or unfair?
In addition to preparing tomorrow's health professionals and helping families deal with disheartening diagnoses, social media is playing another role in the health-care scene.
Rating sites for health-care providers are sprouting up online. The sites' formats vary, but the basic idea remains the same: Consumers can share their impressions of health-care providers online, sometimes without any filtering or restrictions.
Erik Black, Ph.D., and Lindsay Thompson, M.D., M.S., researchers in UF's College of Medicine who have studied the phenomenon, say some providers don't like the idea.
Black, an assistant professor of pediatrics and director of research for the college's Ped-I-Care program, says open rating of health-care providers online is "a messy process," but he doesn't think physicians should object to the feedback.
"The thing about people not liking to be rated, it's a two-way street. We've all used Zagat, and we would never, ever think twice about checking online ratings on a product or even a plumber or a roofer. But for some reason, doctors are above that same standard? That's not the case."
A study authored by Black, Thompson and others from the colleges of Medicine and Education, including Heidi Saliba, B.A., a research coordinator in the Ped-I-Care program; Kara Dawson, Ph.D., an associate professor of educational technology at the College of Education; and Nicole M. Paradise Black, M.D., an assistant professor of critical care in the College of Medicine, examined reviews of health-care providers from four major U.S. cities on the Web site RateMd.com. The research, published in February in the journal Informatics in Primary Care, found most of the reviews were positive, not negative, as the authors had hypothesized.
Though some sites allow users to submit reviews of individual pharmacists, Neissari, the pharmacy student, says she has not heard of any of these sites, and the topic of online ratings for health-care providers has not been addressed by her professors. But she, like Black, says the ratings should be allowed.
"There are times where I've definitely wanted to just post something about my experience with a company. You have product reviews. It's a pharmacist review. It's an opinion," she says. "You know, it's not fact and most Web sites will say that these are just opinions, so hopefully people will understand it's just an opinion."
Bernhardt, the CDC marketing director, says sharing stories and experiences is part of being human, and health-care providers should embrace the growing role of social media in their industry.
"As humans, we've been communicating in our social networks for millennia, so that's nothing new," Bernhardt says. "Having access to Web sites and blogs and social networks ... it's only natural that people are going to both want to share their experiences and also seek out other people who've been through similar experiences to learn from what they've been through. I think social media will always play a big role in health care."