Social Media and Health Care
MADISON - If it hasn't already arrived, social media is coming to a hospital near you, and those organizations that neglect it, or use it unwisely, may find themselves washed away in technology's gaping wake.
That was the common theme pursued by two presenters at the UW Carbone Cancer Center's ninth annual "Advances in Multidisciplinary Cancer Care" symposium, and the research supports their claims about the pervasiveness of Facebook, YouTube, Twitter and the like.
In a 2008 study entitled "The Social Life of Health Information," the Pew Research Center showed the marked increase in Internet access for U.S. households has been mirrored by a dramatic uptick in Internet users seeking health information online.
A full 74 percent of American adults go online now, an increase from 46 percent in 2000, and more than half have broadband connections in their homes. Whereas only one-quarter of U.S. adults sought health information online 10 years ago, today 61 percent do.
Americans are getting more connected, and in the health realm they're not just navigating to WebMD for impersonal, clinical definitions and explanations. They're asking advice of and seeking refuge in the informal online communities social media fosters.
The Pew study found that two-thirds of e-patients - patients who bolster the information they receive from their health care teams with online research - talked to their spouses and friends about that information, and also revealed:
- 41 percent have read someone else's commentary or experience about health or medical issues on an online news group, website or blog
- 24 percent have consulted rankings or reviews online of doctors or other providers
- 24 percent have consulted rankings or reviews online of hospitals or other medical facilities
Julie Swanson, MPH, an outreach specialist for the Wisconsin Clearinghouse Tobacco Control Resource, said during her symposium discussion that social media is popular because it's out there and it's personal.
"The social part of social media is the most powerful. Patients are using social media to make connections," she said. "Patients are saying, 'I get the information I want, the way I want it. I get to choose, and get on anywhere and anytime.'"
She used CaringBridge.org, a website established to unite people with significant health challenges, as an example of social media's power to connect. Rather than hire health care workers or medical writers to chronicle the different stages of disease and recovery, CaringBridge.org lets the patients provide the content.
"It's like Facebook but a little more private and set up for a specific audience," Swanson said, and indeed CaringBridge.org offers many of the features familiar to Facebook users. CaringBridge lets patients create their own sites, with "walls" for posting text, places for pictures and video, and a guestbook feature that allows other users to post messages of support and questions about care.
"It's an online network for people who are going through terminal illness," Swanson said. "Patients can personalize it and talk to people going through similar situations."
Social media, then, adds a human component to a clinical diagnosis, and helps alleviate the isolation disease often imparts.
"They're saying, 'I just got diagnosed. I'm alone and scared and I'm just trying to figure out what's going on. I just want to know a little bit more,'" Swanson said.
Of course, not all online information is good information, and because there is so much, it can be hard to find. That's why Fiona McTavish, MS, says heath care organizations looking to carve out space in the online world should make sure their content is accessible and trustworthy.
McTavish works for the University of Wisconsin's Comprehensive Health Enhancement Support System (CHESS) project. CHESS develops and studies computer-based systems designed to help people cope with health crises, and part of McTavish's job is to figure how why people experience online struggles and how to solve them.
Her guiding principle? Ease the suffering, don't add to it.
"No one should suffer twice," she said while addressing a group of doctors and nurses at the symposium. "Anybody is going to suffer because of a disease. But a second suffering comes from a poorly designed system."
McTavish pointed to a CHESS study during which 300 women with breast cancer were divided into three groups. The first group was given Internet access but no counsel on how to use it. The second group was referred to a CHESS-specific site with targeted breast cancer information. And the third group was the control group, with no Internet access.
To no one's surprise, the group with CHESS access outperformed the group that was free to roam the Internet without guidance. The unexpected returns came from the control group, which provided distinctly more positive feedback than the Internet group. CHESS researchers studied how the Internet group was navigating the web and found that chaos sprung from absolute freedom.
Though the Internet group confined their browsing to health-related sites early in the study, they soon wandered off to hobby and interest sites. Gardening.com was more popular than cancer.org, leaving the CHESS researchers to conclude that guided Internet access is best.
"Just giving someone the Internet isn't enough," McTavish said. "You have to make it easy to use and meet the people where they're at."
And that requires preparation and strategy by hospitals hoping to engage their patients on the social media landscape. It's a lot of work but, as Swanson insisted, that work is likely to be rewarded.
"People find ways to make connections," she said. "So you should be there, in person. If you want people to have a relationship with you, you have to show up."
Date Published: 11/05/2010