Nursing News

Keeping Patients and Visitors from Sharing Too Much

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By Juliet Wilkinson, RN, BSN, contributor 

August 16, 2012 - When I began working as a nurse, it seemed like there was always a line behind the ICU payphone. As one of the primary ways to share a patient’s status at the time, people would feed the phone quarters while reaching out to family and friends. One or two people might have had a cellular phone, but it wasn’t a common appendage. Today, all it takes to share information is a few keystrokes.

Now, instead of phone calls, texting and social networking are the most common ways for people stay connected and share information. Our patients, their family members and friends simply use digital networks to share information in a variety of ways--through status updates, blogs about personal treatment stories and even requests for support.

Although the American Nurses Association (ANA) and other organizations are helping to educate nurses about their roles and ethical responsibilities while using social media, information on how to educate patients and their families is scarce.

Networking avenues  

In addition to the major social networks like Facebook and Twitter, there are now specialized sites, such as, which help patients stay connected with loved ones without the potential for public viewing. Melissa Maggio, the company’s senior public relations specialist, points out that CaringBridge “is designed specifically for this type of sharing.” The site even includes a support planner that helps family and friends organize tasks ranging from bringing meals to the people at home to helping with child care during hospital visits.

Trisha Torrey, author of You Bet Your Life! The 10 Mistakes Every Patient Makes, recommends that patients and families leverage the power of these interactive communities. “Network with people you can learn from. Approach participation as a way to get the health information you need.” Unlike reading a blog or trying to extract information from a clustered website, social networking provides a two-way exchange of information.

What to share…and what not to 

Nurses cannot constrain what websites their patients choose to visit, nor can they tell patients and families how much to share online--with one exception. If a patient, family member or visitor is about to compromise another patient’s confidential health information, it’s your legal responsibility to report that breach of privacy.

Sharing pictures can be just as dangerous as words, especially since the majority of cell phones now come equipped with a camera. While some facilities now restrict the use of cameras and camera phones in certain areas, visitors may not always remember the rules. Nurses can provide reminders and should remain vigilant about keeping protected medical information out of sight.

In regards to the patients themselves, how much to share online really varies based on a person’s comfort level, stated Maggio. CaringBridge provides layers of security, allowing users to restrict public access to their health updates. “We offer different privacy levels so you share information with only those who you want to read it,” she said.

“Consider using a pen name to protect your privacy. You can use a first name and last initial or a nickname that you like,” suggested Torrey. “There are some social media sites that encourage you to waive anonymity. Members may share personal information, such as medical records, which can be used to violate your privacy and your identity. Take the opportunity to learn about the pros and cons of this kind of information sharing before you sign up.”

Patient benefits  

If you’ve cared for a patient with an extremely large family, you know how frustrated everyone gets trying to disseminate up-to-date information about the patient’s status. Social media tools can facilitate this information in an efficient manner. On Twitter, for instance, many people freely post about upcoming treatments, medication regimens and even simple feelings such as, “Not so good today after radiation yesterday.”

Posting and sharing information can help patients feel supported and find like-minded people. It’s especially beneficial to patients who are bedridden or hospital-bound, as social media allows them to stay connected, and research has shown that people with support systems usually fare better than the person fighting a chronic condition alone.

Advocating for your patients 

The Health Information Privacy and Accountability Act (HIPAA) does not apply to patients sharing their own information or protect against well-intended friends sharing information.

If a question about social media and your patient’s protected health information arises, there are people who can help navigate the intricacies of the issue. Start with your health information management division--many hospitals already have information sheets printed for families and patients.

Protecting patients’ privacy--whether in person or through digital media--is part of the job, according to ANA’s Code of Ethics for Nurses. As Provision 3 states: "The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient" (ANA, 2001), and the Code’s interpretive statements, 3.1 and 3.2, are explicit about protecting patients’ privacy and confidentiality.

Do nurses have to be social media experts to enforce privacy rules? Perhaps not, but as the frontline caregivers and liaisons with visitor liaisons, it helps to be familiar with current technologies and social media avenues that are being used to share patient information.



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