How Social Media Helps Educate Afib Patients: Patient Perspectives from the Fifth Annual Western AF Symposium

Atrial fibrillation can be bewildering for patients, especially when they’re first diagnosed. After all, their own hearts have betrayed them, beating out of rhythm, often leaving them exhausted, frustrated, and searching for answers. Increasingly, patients are finding these answers — along with treatment options and support — through social media.

For example, Jason Mattingly, a father of three and sales manager from Dallas, was diagnosed with afib when he was 34.

Because he wanted a treatment option that would allow him to maintain his active lifestyle, he scoured the Internet for information. After participating in conversations at the AFIBsupport Forum (in Yahoo! Groups), he received numerous recommendations to seek out an ablation. After the ablation and a follow-up procedure, his heart is back to normal rhythm. Social media helped guide him to afib-free living, and it can help your patients, too.

In the Flow: Social Media Communication Streams

When you think of how social media relates to afib, think of it as a problem solver. Do you have patients who are clueless about afib, making them more difficult to manage and less likely to adhere to medications? Research shows that community support works better than medication for some. The Pew Research Center’s Internet & American Life Project recently found that social media creates empowered patients who participate in their care.¹ Below are some examples of how the afib patient community uses social media.

Discussion forums. Forums, such as the AFIBsupport Forum, are a place where afib patients post questions, discuss procedures, share information about medications, and help each other cope. As a leading online destination for afib patients, StopAfib.org offers several types of forums, including a general afib discussion forum, local support groups, and special interest groups. Health-related websites, such as DailyStrength (daily strength.org), provide areas where visitors can post questions and concerns about afib. Other forums are devoted specifically to atrial fibrillation, such as the Lone Atrial Fibrillation Forum (afibbers.org/toboards.htm) as well as a number of specialized afib forums within Yahoo! Groups (groups.yahoo.com).

Twitter. This 140-character per entry social media service allows patients to share information, ask questions of afib experts, and stay up to date with the latest afib news by following EP resources such as the Heart Rhythm Society (twitter.com/HRSonline), the American College of Cardiology (twitter.com/ACCinTouch), and EP Lab Digest^® (twitter.com/EPLabDigest). On Twitter, patients can also converse (or tweet) with others who have afib. Through Twitter, StopAfib has connected with patients to help guide them to afib resources and share experiences dealing with the condition.

Facebook. As the most popular social media site, Facebook is much more than a place to share photos of kids and status updates. Through their Facebook pages, StopAfib.org and other organizations connect to patients, share links to news about afib, and encourage conversations about treatments and medications. 

Google+. An up-and-coming social media site, Google+ will be important since it is integrated with Google’s powerful search engine, so you’ll get better search placement by having a presence there.

Blogs. As personal Internet soapboxes, blogs related to afib are places where patients can share their afib experiences. For example, afib patient Michele Straube (bit.ly/straube) blogs about her experience with the ailment and how she is trekking across the European Alps over four summers to raise awareness about afib. Other bloggers, such as journalist Jennifer Leggio (mediaphyter.wordpress.com), have helped afib patients feel like they are not alone. And, of course, our Atrial Fibrillation Blog (atrialfibrillationblog.com) shares afib news and opinions and encourages patient discussions.

Videos. It may surprise you, but YouTube is the No. 2 search engine. With specific channels devoted to afib-related issues, patients can view in-depth interviews with doctors who are afib experts. Especially for newly diagnosed patients, videos (such as Take a Stand Against Afib and Stroke) provide an excellent overview about the condition and can be viewed on the StopAfib YouTube channel (youtube.com/StopAfib).

News sites. With dynamic sites such as Paper.li, patients can create their own personal newspapers, which gather the latest research and news stories about afib and pull them together in one place. As a handy feature, Paper.li takes a Twitter list and automatically publishes the tweets by those on the list, so you only influence the content by what is tweeted.

Live chats. Social media enables patients to connect to healthcare professionals directly. For example, StopAfib.org partners with the Cleveland Clinic for live chats in which doctors answer patients’ questions. Afterward, we post transcripts so others can share the information, too. To view past chats, check out bit.ly/z5UyZ4. In addition to these specific, scheduled afib-related chats, Cleveland Clinic offers daily live chats for patients to ask questions and receive immediate answers. To participate in one of these chats, click on bit.ly/cceducator.

Mobile networking. Phones and tablets are the new social networking frontier. There are now more mobile devices than people in the United States, with 84 percent of the population having mobile devices, and it is similar in other countries. Applications such as AF Stat’s AFib Educator 2.0 (bit.ly/afib-educator) and various CHADS₂ and CHA₂DS₂-VASc calculators help afib patients understand their condition and treatment needs. Patients can also scan the StopAfib QR (quick response) code with a smartphone to access our mobile website and social media sites.

And much more. TweetChat (tweetchat.com) allows groups with common interests to have a conversation all at once. Foursquare (foursquare.com) allows users to connect by checking in at events, such as afib information sessions. Pinterest (pinterest.com) allows people to “pin” images, ideas, videos, infographics, and links related to their condition to share with friends and followers. Skype (skype.com) allows face-to-face communication over the Internet, allowing patients to consult with healthcare professionals. Online, dynamic calendars also update afib patients about events.

The Healthcare Professional/Patient Connection

Social media continues to gain importance in the relationship between healthcare providers and patients. Already, social media figures into how patients seek treatment. According to a recent survey from Pew Research Center’s Internet & American Life Project, more than half of patients felt that online information and social media affected a treatment decision.¹ Because of the influence of social media and online resources, patients asked new questions and received second opinions.

Healthcare providers are embracing social media, too. As mentioned earlier, Cleveland Clinic conducts live online chats. Some doctors are also participating in afib patient forums. For example, the Afib5Box Forum (bit.ly/afib5box) is for patients of Dr. John Sirak’s Totally Thoracoscopic Maze procedure. While a patient created the forum, Dr. Sirak actively participates.

Other healthcare organizations are active on social media sites such as Facebook and Twitter. For example, the CABANA Trial (on.fb.me/fbcabana) and the CARMA Center (on.fb.me/fbcarma) at the University of Utah have Facebook pages. At the recent Western AF Symposium where I shared these remarks, conference director Dr. Nassir Marrouche (twitter.com/nmarrouche) and employees from the CARMA Center (twitter.com/carmactr) tweeted extensively from the conference, including posting photos. Also, during my presentation at the Western AF Symposium, I became the first to tweet from the podium. 

Some doctors even have blogs themselves. Electrophysiologist Dr. John Mandrola from Louisville, Kentucky, once blogged about how his afib episode changed how he related to afib patients, and now he has a loyal patient following (drjohnm.org). Dr. Mandrola recently live-blogged from the Boston Atrial Fibrillation Symposium, and now he is the newest blogger at TheHeart.org.

Social media is all about sharing, and becomes more valuable as you integrate it into your communications efforts and allow followers to share it with their followers. An easy way to spread the social media word: Add a graphical icon called a chiclet or a Wibiya toolbar (wibiya.com) to let readers share your content.

As you communicate with patients via social media, here are a few things to consider — from the patient perspective:

• Listen first to understand the personality of the medium, as each is different, and then tailor communications to it.  
• Remember, it’s a dialogue, not a monologue.
• While it’s difficult, be willing to be vulnerable. Dr. Mandrola’s blog is an excellent example of how such vulnerability connects to patients. 
• Don’t be snarky or cynical.
• Be willing to learn from patients by seeking their comments.  
• Don’t encourage everyone to follow you; just focus on your target market.
• Talk in ways that patients understand (i.e., no jargon). For ideas on how to communicate with patients, check out my remarks in Bridging the Afib Communications Gap: Afib Patient Perspectives from the Fourth Annual Western AF Symposium at bit.ly/gz92pO.

Healthcare providers play an essential role in social media by becoming “nodes” in patients’ networks, helping them make decisions and solve problems. I dream of a world where doctors and patients work together to solve the afib puzzle, using everything at our disposal, including social media. In that world, afib will no longer be the bane of your existence, or of ours. If you feel this way, too, send me a tweet at twitter.com/stopafib.

Reference

1. Rainie L. “The Rise of the e-Patient.” Pew Research Center’s Internet & American Life Project. 12 Jan. 2012. Accessed 12 March 2012. <pewinternet.org/Presentations/2012/Jan/The-Rise-of-the-ePatient.aspx>.