Online sites offer potential benefits, risks to health-care consumers
By Gary Pettus
Soon after her baby began his battle with a shockingly rare disease, Lauren Casavechia experimented with a relatively new and potent therapy: blogging.
The Web log
she started to follow her son Hayden’s diagnosis offered something traditional medicine did not: a way to connect with, console and be comforted by parents like her.
Lauren and Hayden Casavechia
“It’s easier to talk to each other sometimes than to your friends who have healthy children, because you don’t want to make them sad,” said Casavechia of the Scott community near Greenville. Her son was treated at Batson Children’s Hospital
“You give each other advice and share information; the blog has been my big help.”
Blogging is just one form of social media – along with commercial sites such as Twitter, LinkedIn, Skype, Facebook and more – that has befriended medicine at the University of Mississippi Medical Center, treating patients with a free supply of boundless information while arming practitioners with fresh instruments for research, education and awareness.
“We use Facebook
, you name it,” said Kevin Stump, CEO of the Mississippi Organ Recovery Agency
, which deploys social media to encourage organ donation and boost donor registries, a potential benefit for transplant candidates at UMMC.
In May of 2012, Facebook added features that promoted organ donations and provided links to register
. Within the first week, as reported by the John Hopkins University medical magazine
, the number of registered donors had exploded nationwide by 1,183 percent.
“You have to use traditional and social media,” Stump said. “It takes all avenues.”
The trick is to avoid making a wrong turn. Social media and the Internet are a laundry list of medical symptoms – and a fountain of hypochondria. They’re a support system for the sick – and poor substitutes for doctor’s appointments. They’re aces at describing a disease – and amateurs at identifying yours.
Using the "Symptom Checker" from WebMD on an iPad
“There are no controls for who claims to be an expert,” said Dr. David Norris, assistant professor of family medicine. “E-medicine, WebMD and FamilyDoctor.org are among the reliable Web sources. But there are other sites that are not professionally validated.”
This is worrisome in light of a survey compiled by the Pew Research Center in late 2012: One out of three U.S. adults has used the Web to dope out a medical issue.
“There is a huge potential for misinformation,” Norris said.
Even patients who depend solely on trustworthy websites, rather than visits to the doctor, could be risking their peace of mind, maybe their health. They may conclude they’re under attack, say, from poison ivy when the culprit is shingles – or vice versa.
“They may self-diagnose with very rare, and at times very frightening, diseases,” Norris said, “when there’s a more benign cause.”
They may resort, unknowingly, to a harmful treatment, as one of his patients did, based on a Facebook post’s recommendation for controlling diabetes: cinnamon.
“Cinnamon sugar is concentrated carbohydrate, which actually made her condition worse,” Norris said.
The Mayo Clinic's 2012 book set the standard on social media use in health care.
Still, social media’s potential for sweetening health care is immense. The Mayo Clinic has acknowledged its power by creating the Social Media Residency Program, where participants learn to shoot, edit and upload videos with smartphones and other devices. They learn how to improve patient education, employee-patient communication and their organization in general through social media.
For its part, UMMC has its own Facebook page and Twitter news feed for patients and employees. Mindful of social media’s strengths, many physicians and faculty members have launched themselves deep into cyberspace.
Dr. Sydney Murphy, an instructor in pharmacology and toxicology, is particularly “Facebookish.” As a member of a section committee for the American Physiological Society, she updates a page with training schedules, awards announcements, job application guidelines for students and more.
The society also exploits, or plans to, such sites as HootSuite and ResearchGate to keep scientists wired in and savvy, she said. LinkedIn, for one, can be kind to careers.
“Dr. Granger can go in my page and say, ‘Sydney is an expert in the field of kidney disease, hypertension,’” Murphy said. “It’s like a letter of recommendation.”
Dr. Joey Granger is dean of the School of Graduate Studies in the Health Sciences and a social media convert – to a point.
“It can spread the word about a new study, new approaches and treatments,” said Granger, Billy S. Guyton Distinguished Professor of Physiology and Medicine. “You’re reaching a wider audience.”
But he draws the line at releasing, willy-nilly, studies and experimental treatments not carefully scrutinized.
“The foundation of medical research is peer review,” he said.
At any rate, research is getting poked firmly by Facebook and its cyber cousins, especially in the area of recruitment. A month or so ago, the Division of Clinical Immunology posted a plea for study subjects on its new Facebook page, said Dr. Krissy Rehm, division director. Within an hour, 100 people had seen it.
“Our standard way of recruitment is to put out flyers around the medical complex and on the Intranet scrolls,” Rehm said. “But everybody is on Facebook.”
A social-media relative, GoToMeeting recently, and instantly, transported through the ether a UMMC biochemistry research lab to eighth-graders at Bay Waveland Middle School in Bay St. Louis, about 170 miles from Jackson.
“We used an iPad to show them around the tissue culture room,” said Dr. Hanna Broome, who earned her Ph.D. in biochemistry in May and helped organize the Web-hosted video conferencing sessions as a graduate assistant. “Then we moved to a computer with a webcam to show them pictures of cells under the microscope.”
Those live images were of HeLa cells, as described in the book the students were reading, “The Immortal Life of Henrietta Lacks.” Those conferences reached well over 100 students who did not have to endure a three-hour bus ride to Jackson or squeeze into a crowded lab to see their studies come alive. They sat in the school library.
“This is a great tool for awakening in students a passion for science,” Broome said, “especially students who may not have otherwise been able to visit a lab.”
Social media’s capacity to bring like-minded, but far-flung, people together continues to hearten Casavechia even now, after her son’s death last August when he was 14 months old.
Hayden’s frequent seizures were caused by adenylosuccinate lyase deficiency, a disease that affects only a handful of children in the United States, and not many worldwide. After Casavechia couldn’t find much information about it, she started her blog “so that when other families came in contact with ASLD I could help them.”
People from across the world found her – her blog had nearly 100,000 views as of January – people whose children had similar diseases or whose babies suffered from seizures. People seeking answers.
“I might not have the answers,” Casavechia wrote, “but would love to communicate.” Rather than focus on the statistics, she said, “I would love to share how we made each day count in Hayden’s life.”
Social Media and Health
Percentage of social media consumers who have:
• posted about their health experiences or updates: 24
• commented about their health experiences or updates: 27
• posted reviews of medications or treatments or doctors
or health insurers: 16
• shared health-related videos or images: 16
• traced and shared their health symptoms or behavior: 18
• joined a health-related cause: 20
• supported a health-related cause: 28
Source: PwC HRI Social Media Consumer Survey, 2012