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Gaining Perspective on Patient Engagement Through Social Media

March 19, 2014
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On the surface, the idea of getting clinicians to interact with patients on social media comes with much apprehension and worry. HIPAA privacy laws are at the forefront of these concerns, and additionally, doctors have to be very careful about how they construct responses on a social networking forum for patients who might not even be their own. After all, this wouldn’t be the first time the healthcare industry has dealt with social media and privacy concerns.

So you can forgive me for having my doubts leading up to a conference call last week with the Hospital for Special Surgery (HSS) in New York City. As my colleague, Senior Editor Gabe Perna, wrote about back in October, HSS has been using Facebook chats to convey health information and raise awareness of lupus, an autoimmune disease. Last year, the hospital joined forces with a community-based lupus organization, S.L.E. Lupus Foundation, to publicize the chat, and subsequently tripled the number of participants. The chat went from 2,280 users and 60 questions in May 2012 to 6,624 people and 162 questions.

The last chat in November reached more than 7,600 people and involved more than 125 participants with questions and comments, and during the week of the Lupus Chat there was an increase of 271 new Facebook likes for the HSS page. According to the Lupus Center of Excellence at Special Surgery, the Facebook chats raised awareness, helped them reach a wider audience, and perhaps most importantly, allowed for interaction between patients and providers.

Still though, even upon hearing this, I was unsure. Many doctors still cling to pen and paper, and are most comfortable using e-technology to communicate with each other—not with patients. How would these physicians adapt outside their comfort zone? Would patients take the information the wrong way, and further, would the anonymity that comes with online communication lead to more messiness?

Jane Salmon, M.D., director of the Lupus Center of Excellence and HSS rheumatologist, makes it clear that the physicians, nurses, and social workers who participate in these chats aren’t delivering healthcare, but instead giving patients guidance about where they can seek care and information from.  “We’re not delivering care to them; we don’t know them, so we can’t do that,” Salmon bluntly told me in the interview last week. She added that some patients will ask about unusual alternatives to normal treatments or unconventional ideas they may have read somewhere, so the chats also serve as a way to get rid of disinformation, with all sorts of bad information on the web.

Many people—including myself—don’t know too much about lupus. According to, it is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Research estimates that at least 1.5 million Americans have lupus, but there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.

Because it is a fairly uncommon condition, Salmon says that people are desperate for quality information. “People can look on the web for brochures, but they want questions answered and are often looking for experts,” she says. She added that patients will ask questions about their medication—Are there new medications, are they on the right ones, are there side effects/concerns, is pregnancy safe, will a Lupus patient have a child with Lupus? Then there are also questions that deal with a patient’s mental state, for which social workers are present during the chats, says Salmon.  

Elyse Bernstein, HSS' social media director, added that some patients will ask more personal questions outside of the chats by sending questions via Facebook message or to a private social media email address designated for the specific chats. “We do ask people to not ask personal questions or put anything out there they don’t want publicly seen, but essentially, patients are opting in to be a part of it,” Bernstein says.

And despite my skepticism about physicians wanting to give out information to anonymous patients, Salmon says the doctors couldn’t be more engaged themselves. “The clinicians are very enthusiastic and feel very good after they participate. With these chats, they can reach a much larger population than a one-on-one visit or even a lunchtime talk in our lupus support group that we have monthly. It hasn’t been a problem at all to get them to do it after hours, and the rheumatology community has embraced it,” says Salmon.

By the end of my conversation with Salmon and Bernstein, my questions were answered and my concerns had subsided. They made it clear that the responses given by the HSS faculty were general, and certainly not specific to dosage or anything of that nature. Most responses concluded with, “You should discuss this further with your rheumatologist.” I was even able to check out doctor-patient interaction in the most recent Facebook chat, and saw that the communication was exactly like what I was told. Here is a snippet of that chat:

Question: Can there be a link between Lupus and teeth issues?

Monica Richey, R.N., nurse practitioner: At this point there is no research study that shows that teeth issues can cause lupus. That said any kind of infection can make lupus worse. Also if you have Sjogren's you have to really be attentive to you dental care.

Patient: But can the lupus cause you to have dental issues?

Molly's Fund Fighting Lupus (also part of the chat): What medications do you take?

Richey: Dry mouth sometimes is associated with lupus and that can cause you to have dental problems, such as cavities. For that issue you will need to use a gentle cleanser and also avoid mouth washes. Biotene has a series of products developed for people with dry mouth issues.

Joanna Harp, M.D., dermatologist:  If you are on steroids for long periods of time that can weaken your teeth (just like it can weaken your bones). It is definitely worth sharing with your dentist your lupus dx and if you are steroids as he/she may be able to try things that can strengthen teeth.

Doesn’t look so bad to me. The fact is, more and more now, the healthcare industry is recognizing the potential for social media to strengthen the connection within the community for existing healthcare centers, patients, and physicians, while attracting new followers and patients. I understand that some doctors want nothing to do with social media, but for those who might be on the fence, hopefully positive experiences such as this one prove as a step in the right direction for physician-patient communication outside the four walls of a medical office.

Yes, there needs to be rules, and yes, there needs to be trust, but examples like this one show how valuable that sort of engagement can be. The doctors are the ones who have the power of knowledge, and in my opinion, the more ways they can spread that wealth, the better.

Questions or thoughts? Feel free to add a comment or on Twitter by following me at @HCI_RLeventhal


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