When Atlanta-area couple Emory and Courtney Lott adopted their daughter Emmy, she was just 3 weeks old, but they were already anticipating frequent visits to the doctor’s office.

Emmy was born with sickle cell disease. Now 4 years old, she suffers from debilitating symptoms such as limb pain, high fevers and spleen problems. She has been admitted to the hospital more than 50 times.

Sickle cell deforms red blood cells and causes them to clog small blood vessels. This creates a process of inflammation and oxygen starvation, resulting in intense pain. The disease evolved as a mutation to protect people against malaria, and sub-Saharan Africa is one of the major areas where that took place. That is why the sickle cell trait, which occurs in various ethnic groups, is especially common among African-Americans.

Last March, Emmy developed a severe case of acute chest syndrome, a potentially fatal lung-related complication that occurs in some sickle cell patients. Emmy’s treatment and recovery required an extended stay in the Pediatric Intensive Care Unit at Children’s Healthcare of Atlanta at Scottish Rite Hospital. It was during this particular admission that her mother decided to share Emmy’s story via social media.

“She was very, very sick, so our doctor suggested that I make a Facebook page as a way to take my mind off of how sick my child was,” Courtney Lott said. “The page was a way to update people, have people praying, and let them know what was going on.”

Lott created a Facebook page, “Pray for Emmy,” which has grown into a group with more than 3,800 followers. Lott posts on the page fairly often, as followers inquire about Emmy’s condition and express interest in how she is doing overall.

“Emmy is like a little celebrity,” Lott said. “I’d say that 99.9 percent of the time, we have had an overwhelmingly positive response on social media.”

Just a decade ago, social media groups like Emmy’s did not even exist. In fact, most social media platforms were just starting out and were rarely, if ever, exclusively used for health care communications.

Now, hospitals all over the state and the nation are using social media.

According to the Georgia Hospital Association, 77 member hospitals currently have Facebook pages and 41 have Twitter accounts.​

“In many hospitals throughout Georgia, social media has become an integral part of the way that these organizations communicate with patients, families and employees,” said Erin Stewart, the GHA’s director of communications and social media. Use of social media “has helped strengthen hospital-patient relationships and has allowed hospitals to be part of the conversation that members of their community were already having about them.”

Tracy Dean, manager of social media content at Children’s Healthcare of Atlanta, has watched the rise of social media and the key role it plays in CHOA’s engagement with the patient community.

“From the grocery store to baseball fields, the care we provide is a topic of conversations between moms and dads, grandparents and neighbors,” she said. “Today many of the conversations have moved online with social media. These open platforms amplify messages and allows for us to publicly engage with these individuals and groups of people.”

Knowing the risks

Of course, people’s social media posts can potentially reveal a lot of personal information, sometimes including sensitive medical data. And so, as more health care facilities turn to social media, questions have emerged about privacy. The Emergency Care Research Institute released new guidance on social media practices in early 2012.

In a January 2012 press release, Paul Anderson of ECRI addressed the importance of establishing social media policies and procedures to counteract privacy concerns and other potential risks.

“I won’t tell you that you have to join Facebook or set up a Twitter account, but your patients and staff are using these tools,” Anderson said. “Yes, there are privacy and reputational risks, but social media can present tremendous opportunities for hospitals to communicate with their communities, patients and staff.”

At CHOA, Dean said, her team first addressed HIPAA privacy concerns when it sought to align hospital-wide social media with employee policies on e-communications. This led to the establishment of CHOA’s social media policy.

“According to our social media policy, by posting any content to our social media sites, the user grants Children’s the right to reproduce, distribute, publish or display content on our channels,” Dean said. “In addition, CHOA’s Marketing and Communications obtains digital consent forms for all patients we photograph and film — this safeguards us to have this content appear on our social channels.”

When Courtney Lott posts photos and status updates to social media with the #CHOA hashtag, the hospital’s social media policy is in the forefront of her mind.

“I always try to be very cautious about what I am posting and make sure it doesn’t go against any of their policies,” she said. “I am also friends with a lot of the nurses, so I check with them before posting. They are supportive of that.”

The sharing that’s possible through social media has helped to form patient relationships and online communities for families like the Lotts. CHOA’s official social media have shared Lott’s Facebook posts about Emmy in an effort to support her and raise awareness of sickle cell disease. A special digital relationship has developed between the hospital and the families it serves.

“We saw this as an opportunity to provide engaging content through our digital channels that would help people open up and connect about their experience,” Dean said.

For Lott, social media engagement has led to friendships with fellow families of sickle cell patients at CHOA, and support from friends and complete strangers.

“Using social media as a white mom with a black child, it can be very hard for me to connect with others,” she said. “So I’ve used social media to find a community and to have people who know what I am going through.”

Today, Emmy continues to have occasional high fevers and blood transfusions. Her severe symptoms sometimes result in precautionary emergency room visits. When that happens, Lott spreads the word through social media.

“We are at CHOA much as we are at home.” Lott said. “They are truly our second family and I am thankful for that. We just sing their praises.”

Natalie Duggan, a GHN intern, is a senior at Emory University, majoring in journalism and anthropology, specializing in health writing. She has previously interned at the CDC, the CNN Medical Unit, and was a summer 2013 ORISE research fellow at the National Institute of Allergy & Infectious Diseases.