FORT LAUDERDALE, Fla. — Medical updates are no longer hushed discussions held behind closed doors. They’re going viral. And they’re increasingly being shared with family, friends and, sometimes, digital strangers.
“Prayer warriors we ask that you keep our little Angel in prayer for her heart catheterization tomorrow,” reads one recent update on “Layla’s Miracle Heart” Facebook page.
That’s where Amena Kahn shares the latest news about her daughter’s heart transplant journey, which began at Joe DiMaggio Children’s Hospital in Hollywood, Fla. Such social media pages and websites make it easier for caregivers and their families to keep concerned friends and relatives updated during a time of illness.
“I could do one update at the end of the day vs. re-explaining everything over and over because your mind is not there, your mind is on your kid,” said Kahn, of Lauderhill, Fla., whose page has swelled to more than 18,000 followers. People fill her inbox with prayers and good wishes. (Layla currently has a feeding tube and is doing well with her new heart.)
But having such a public exchange online, where people discuss and comment on health issues, raises privacy concerns for medical institutions as well as families. It also may draw comments that spread misinformation or question health-care decisions.
One commenter questioned whether Kahn’s daughter was really her baby. Another messaged her that someone had used Layla’s photo on another page and said she had died.
“It’s a concern sometimes. But overall, it’s been positive,” said Kahn, whose daughter was born in July 2011 with hypoplastic left heart syndrome, a congenital heart defect.
Kahn advises developing expertise before sharing information online.
“If they are going to create a page, be educated about their child’s condition,” cautions Kahn. “If you are going to allow people into your journey, you should know about it so you can really share with them.”
Kahn had help from another mom at the hospital in setting up the page last year. With her smartphone, she updates frequently.
Some hospitals also refer people to professional sites such as CaringBridge.org and Mylifeline.org, which provide free customized websites that help foster online communities of support.
CaringBridge.org has a partnership with Cleveland Clinic Weston’s corporate headquarters in Ohio to help families disseminate medical news. So far, the nonprofit web service has helped 227 people in Fort Lauderdale and 102 in Boca Raton build their own websites.
“The landscape and the environment of people being online has changed … People are much more online sharing information,” said Sona Mehring, founder of CaringBridge.org, based in Minneapolis. “They are also realizing that they need to have a more protected, trusted environment. Facebook is more around small talk, but CaringBridge is for when a real conversation is needed.”
Typical users of CaringBridge are women with cancer. But other top conditions are premature births, injuries and heart-related conditions.
“It’s important that if something flares up or comes up, they are able to bring together that community,” Mehring added.
While many hospitals don’t discourage patients and their families from creating pages, they generally don’t provide hands-on assistance because of health privacy laws.
The intersection of online support and patient care has been a topic of interest for Kerting Baldwin, director of corporate communications for Memorial Healthcare System in Broward County, Fla. Baldwin based her doctoral dissertation on whether newly diagnosed breast cancer patients would be open to sharing their stories for online support. She found that they would.
“The challenge is: How do you protect patient privacy and patient confidentiality in a forum which is very open, and how do you provide sound medical information that helps correct anything that may be erroneous in the conversation?” Baldwin said. “That is probably one of the reasons why the hospitals don’t recommend it. There is the danger or threat to patient privacy.”
Users can control privacy settings. CaringBridge.org gives the option of providing a login and pass code for select visitors.
Pembroke Pines, Fla., mother Trace Jones carefully picks and chooses what to post about her daughter’s medical journey on her Facebook page, “Hearts for Kylee.” Two months after being born in 2011, Kylee went into heart failure. She had a heart transplant last summer.
“Got some much needed great news today, after lowering Kylee’s meds her white blood count is higher than it’s ever been and she is no longer anemic, best of all her angel heart is liking the new dose as well,” reads a recent post.
At first, the page was a place to inform and connect.
“It helps get emotions out. If I was having a rough day, I can write something and people would give me words of encouragement,” said Jones, an elementary school teacher. “A few words of kindness pep you up to make you feel better.”
Since launching the page, it has grown to more than 400 likes — and not just from friends and family.
“One of the reasons I keep the page now is hoping to bring awareness of organ donation,” said Jones. “It’s an outlet for me to express gratitude to our donor family as we have not been able to meet them. We gained lots of friends, people I don’t even know who gave words of encouragement.”
On the page, photos capture a smiling healthy girl who loves the color pink and Disney princesses.
“It does give parents hope to see how healthy she is,” said Jones.