Generally, patients of rheumatologists are a sophisticated group. Many times, there is a delay between the start of symptoms and finally getting a diagnosis, they are often proactive in educating themselves about their illness. Increasingly, they are turning to social media (SM) to connect with other patients, share tips, and get information.
“Patients look to social media for support, understanding, compassion, and to know they are not facing their disease alone,” says Penny Henthorn, a patient from Beloit, Wis., with rheumatoid arthritis and creator of the Rheumatoid Arthritis Forum on Facebook. “The knowledge I gain on these kinds of sites helps me better cope with my disease and not be afraid of it.”
Knowledge Gained
This can be especially important for the newly diagnosed individual who may not receive—or may not retain—all the answers they need from health professionals. SM allows less structured interactions, giving patients an opportunity to validate, or clarify, what they heard in the stress-filled minutes after their diagnosis.
“The knowledge new patients gain from more experienced patients during the early stages of their disease cannot be overestimated,” says Naomi Creek, president of the Young Women’s Arthritis Support Group in Australia. “It is a very scary time, and having a group of ‘go-to’ people in the know can be very comforting. Even for those who have lived with their condition for a long time, there are always ups and downs, new symptoms, and life challenges that can be made easier just by talking with others who understand.”
These are also good ways for the patient to get reinforcement of what they are being told by their physicians from someone who has already been there and done that.
“Social media helps bridge some of these gaps through the combined knowledge and experience of many people,” says Kelly Young, an RA patient, author of the Rheumatoid Arthritis Warrior website (www.rawarrior.com) and founder of the Rheumatoid Patient Foundation.
Access to Experts and Others
Social media gives patients information that they may not have had access to otherwise. Many of the discussions include a wide range of disciplines.
“Through social media, you are exposed to many great people,” says Young. “Some are patients, but families, physicians, and researchers also come together and communicate successfully with each other. I know of no other place where that variety of expertise could be attained.”
Social Interactions Key Draw
As the name suggests, social interactions are another important reason that patients head to these sites.
“The key thing that patients get from social media is the feeling that they are not alone—that they are connected to others who are going through what they are,” says Creek. “That connection can be instant and ever changing, meeting new people and gaining new insights daily. With Facebook pages, Twitter feeds, blogs, forums on websites, and chat rooms, it is a smorgasbord of interaction opportunities that just isn’t available elsewhere.”
SM outlets bring together many different sources of information, too. Not only from professional and consumer backgrounds, but also from a wide geographic area.
“I would love to see more doctors, especially rheumatologists, become involved with social media,” says Creek. “Not only to converse with other doctors, but also with patient groups. I believe it provides a neutral public space for physicians and patients to discuss serious issues, which can be beneficial and enlightening to everyone involved.”
Henthorn agrees, noting that it is often a two-way exchange of knowledge. Physician participation helps doctors get a better idea of what the patient experiences every day, what scares them, what frustrates them, and what depresses them. This is something that is not possible to get during an office visit every few months.
Main SM Players
The main players in SM have slightly different roles and have slightly different ways patients will access them. Facebook, for instance, encourages conversations, connections, and sharing between both individuals and organizations. Most of the disease-specific foundations and many patients have a presence there.
Twitter, in contrast, promotes real-time sharing and has a method to monitor topics of interest. Postings here, called “Tweets,” are limited to 140 characters, so there are less intense interactions. Some people think of it as a headline news channel.
Blogs are websites that function as a journal or a means for a person or group to disseminate current information on a specific topic. These allow the greatest flexibility in length and format. They may provide a forum or other means for doctors, patients, and even industry to discuss the topics presented.
There are SM channels that have not yet gotten to the high levels of acceptance that the ones above enjoy. LinkedIn is more professionally oriented and has a business-to-business focus. Google+ works as competitor to Facebook and it allows both interest-based communities and individuals to hook up. YouTube is a video-sharing website. While it is viewed as a SM channel, it mostly functions as a place to store information, and people are sent to it from other options. Pinterest is also increasingly popular as a way to share information, inspirational messages, and even humor.
“For us, social media is a way for our patients, their families, researchers, and physicians to interact,” says Elizabeth Trocchio, director of marketing at the Sjögren’s Syndrome Foundation. “Being diagnosed with a disease few people have heard of, and few can pronounce, is scary. Sjögren’s is not a well known disease, which makes getting accurate information out in a timely manner even more important.”
Trocchio notes that the foundation uses social media like a virtual support group for patients online. This can be important in some of the relatively rare diseases where there may not always be enough interested people to support local groups. Even if hometown support exists, some feel more comfortable in SM situations when compared to in-person interactions.
Wheat and Chaff
Tongue-in-cheek insurance company commercials not withstanding, there is no requirement that only true information be placed on the Internet. As more patients turn to social media as an adjunct to talking with their healthcare providers, what kinds of things should a rheumatologist know to help guide them?
“To be able to answer the questions patients may have, it behooves the doctor to be familiar with what social media is available for the diseases they treat,” says Chris Collins, MD, program director for the division of rheumatology at Washington Hospital Center in Washington, D.C. “They should have a handful of resources that they have vetted and feel are accurate to give to their people.”
He suggests that the major disease-specific foundations such as the Arthritis Foundation and Sjögren’s Syndrome Foundation are good places to start. Many of the major medical centers may have Facebook pages or Twitter feeds with good information.
Even organizations that have not traditionally been patient focused are finding that social media connects them with patients as well as healthcare professionals. “A little over three years ago, the ACR began using social media to engage various groups of people,” says Erin Latimer, director of public relations for the College. “We quickly learned that we weren’t just engaging in conversations with our members, but we were often engaging with patients. In fact, the majority of our social media followers are currently patients and caregivers, which gives the ACR a unique opportunity increase the value of rheumatology among patients, provide helpful information and resources, and offer ways for our members to communicated with patients—and each other—through the ACR’s social media outlets.”
There are many sites available that are run by patients or others with an interest. The physician should look at these closely before adding them to any suggested social media list. Physicians should review what is being said, the background of the people involved, and if there are likely to be any ulterior motives driving the content.
Red Flags?
While little research has been done on red-flag indicators that patients have gotten bad information, some things should at least raise the index of suspicion.
“I have had people come to me saying that they stopped taking their medicine after they found out on the Internet that drinking green tea four times a day would cure whatever it was they had,” says Dr. Collins. “If a patient has done unusual things with their medications or is trying alternative treatments that have no scientific backing, I will ask where they are getting their information.”
Dr. Collins doesn’t think that we are yet to the point where a physician should ask for a list of social media that patients are accessing along with their medication list at every appointment. He does suggest asking patients open-ended questions about whether they have read anything online they’d like to talk about. For many of the outlets, there is a certain amount of self-policing that goes along within the group. Participants are not hesitant to confront those who are blatantly trying to push their own agendas.
“Anytime you are on the Internet, you are going to get a wide variety of people and a wide spectrum of both good and bad information,” says Trocchio. “Our patients are vocal and there is good debate over the usefulness of alternative treatments that are presented. Bad information tends to get weeded out quickly because of the substantial conversations we have on our social media sites.”
“With such a varied group, problems are usually taken care of without much intervention from the owners,” says Karrie Sundbom, digital marketing manager for Molly’s Fund Fighting Lupus, in Portland Ore. “Someone comes in saying that the antiinflammatory diet cured their lupus, others will chime in about how lupus is a very individualized disease and not everything works well with all people.”
The bottom line is that social media is playing a more important role in the life and treatment of patients with all kinds of diseases. Physicians should increase their knowledge of what is out there and help patients get connected with resources that are giving out good and scientifically sound information.
“Physicians really need to know where their patients are going to get their information,” says Sundbom. “If they are going to the web or social media, we’d like doctors to help their patients make good decisions and help them find the best resources available online.”
Kurt Ullman is a freelance writer based in Indiana.
