|Dr. Deanna J. Attai is Assistant Clinical
Professor, Department of Surgery
and President, American Society of Breast Surgeons.
Photography: Amanda Friedman
Deanna J. Attai, MD, is a champion of social media who believes that healthcare providers can use online platforms like Twitter and Facebook to reach patients, encourage communication and provide correct medical information.
As more patients seek out medical information and emotional support by turning to social media and the Web — a Pew Research Center study found that 72 percent of Internet users looked online for medical information — physicians and medical providers not only are embracing the platform, but also are beginning to study and learn from it. The utilization of social media seems to be especially successful when used to moderate discussions of certain illnesses or diseases, particularly cancers of the breast, lung and pancreas, forming Internet support groups for survivors as well as individuals currently battling disease. Deanna J. Attai, MD, assistant clinical professor of surgery and president of the American Society of Breast Surgeons (ASBrS), joined Twitter in 2010 and currently is co-moderator of the Breast Cancer Social Media group (#BCSM). Founded in 2011 by two breast-cancer survivors who met on Twitter and described as “the intersection of breast cancer and all things social media,” #BCSM began as a weekly tweet-chat that now has grown into an online community that touches upon all aspects of breast-cancer diagnosis, treatment and survivorship. Dr. Attai recently published a study on the subject of social media as a tool for patient education. She spoke with U Magazine contributor Marina Dundjerski about this growing trend.
Why do you view the use of social media as a critical education tool for healthcare providers and patients? Dr. Deanna J. Attai I feel very strong about being involved in patient social media, especially with so many people going online for information. There is a lot of misinformation and erroneous information out there. Patients will come in and say, “I read this online and I read that online,” and we’ll roll our eyes, but the reality is that we’re not doing a good enough job putting reliable info out there. So one of our important roles as physicians is patient education; we need to tailor that education to where patients are at. Not everyone is going to do local-news interviews, but by getting involved in the various uses of social media, we can make sure that the information patients see is accurate. A physician doesn’t have to spend 20 hours a week on social media; there are so many different platforms available that he or she can find one that works. I think medical institutions are increasingly recognizing the value of having physicians’ voices on their websites and other social-media platforms.
What kind of reach does social media have for physician and patient education? Dr. Attai: Getting good quality information out there is, in a sense, a community service. I have a network of collaborators, and “meeting tweeting” has become very popular. As you listen to the lectures at national gatherings or annual meetings, physicians will send out real-time tweets. On the one hand, physicians can bounce the ideas of 20 colleagues across the country in real-time, and patients who want to know what’s active online can also get involved. So it becomes part of public education. At the recent annual meeting of the American Society of Breast Surgeons, 1,400 members attended two-and-a-half days of meetings, and we had about 14-million impressions on Twitter.
It was like each attendee shared his or her tweet with approximately 10,000 individuals. You can’t get that reach unless you use social media.
What have you learned about breast-cancer patients through your use of social media? Dr. Attai: The biggest thing I’ve learned is that patients often don’t hear what we’re telling them in the office. I was struck by the types of conversations I was having online. I thought, “Aren’t doctors explaining this to their patients?” A lot of time, it does get explained, and in my specialty, breast cancer, I can spend 90 minutes with a patient. But the patient may be partially in shock. She was told three days ago that she has breast cancer and doesn’t hear all that is being said, although she is following along. Other times, patients have misconceptions. Another big thing we’ve learned is that patients are afraid to ask for second opinions. When I got online, my very first moment, there were two friends talking about a mutual friend who was diagnosed with an unusual form of breast cancer. She had received a recommendation to have a mastectomy, but the friends were asking if the patient had had an MRI scan. I wound up on Twitter directly with one of the women who gave me more details, and while I said that I could not give medical advice, I did know there were two ASBrS physician members who were local to her, and she may want to consider getting a second opinion. Several weeks later, I learned that she went to both physicians and wound up staying with one of them and got a lumpectomy instead of a mastectomy and was about to start radiation. That’s one way, as a physician, that I can actually interact with a patient to offer general guidance and empowerment.
How has this realization and your involvement on #BCSM and social media changed the way you interact with patients? Dr. Attai: As doctors, we think we have a good idea of what our patients are going through. But, really, we don’t. By being involved in #BCSM, I have learned that there are a lot of side effects to treatment that patients aren’t reporting to us. They put on their good clothes and their lipstick and come to the appointment with their best face forward and say they are doing OK. But patients talking to each other online have told us about many things they aren’t reporting in their appointments. For example, a cancer patient might ask online, “I have a bad taste in my mouth after chemotherapy, does anyone have any suggestions?” Someone might respond, “Try ginger tea. It helps me.” That patient might come for her visit and chemotherapy, but how she feels after chemotherapy isn’t necessarily discussed during the appointment. So now I ask patients different questions. And I have asked some individuals why they don’t tell their doctor everything. The general response is, “It seems like these concerns are so trivial when the doctor is trying to save my life.” Others feel that their symptoms were brushed off. So as a physician in an online community, I encourage patients to bring their symptoms to the attention of their doctors.
How do the weekly chats you co-moderate help patients? Dr. Attai: Breast Cancer Social Media, or #BCSM, was started by two breast-cancer survivors, Jody Schoger and Alicia Staley, and their first tweet chat was held on July 4, 2011. I missed that first one, but they had so many people come on that I joined in for the second chat, and I was the only physician there. In October 2011, I was asked to be a co-moderator. Some of the topics that are discussed include parenting with breast cancer and how to manage a host of survivorship issues. I learned a lot from listening to that — more about what patients weren’t sharing with us. The chats usually have four questions, structured over a one-hour period. Questions we’ll get might include something like: “It took me that long to move on; have you ever held on to some part of yourself, some part of your life pre-cancer?”
So it’s almost a form of group therapy? Dr. Attai: It honestly is a form of group therapy. About one-third of patients diagnosed with breast cancer will take advantage of a support group at some point during their treatment. But many women will not attend, for a variety of reasons, including inconvenient meeting times, transportation issues or the feeling that their needs are not addressed. These online discussions provide a valuable option. But any support group, in person or online, is only as good as its moderator, so we make sure not to have the chats lean toward one person and make sure all viewpoints are expressed. We also try to make sure that we don’t have anyone jump down someone’s throat with anti-chemotherapy views or things like that. We want this to be evidence-based, not how shark cartilage might cure your breast cancer. A lot of patients are not comfortable sharing online — they will sit on the sidelines. So we have many individuals who just read the chats and don’t participate with comments, but they still are getting information. We also reach many individuals in other countries. I can be here in Los Angeles but reaching breast-cancer patients from Italy or Libya or Afghanistan — some places where access to such information is not so readily available.
What have been some of the most popular chats? Dr. Attai: The chats that have drawn the greatest participation have been when someone has died. A number of years ago, two women with metastatic disease died within a couple of hours of each other. It happened early on a Monday morning, and that night the chat was essentially a memorial service. In this way, we really are a community. We share condolences, virtual hugs, what lessons we have learned, things like that. It’s cathartic and helpful.
You are an advocate for patient empowerment. How does the use of social media affect this? Dr. Attai: Overall, by our providing the education and the structure for patients to be able to ask whatever they want, in a non-intimidating fashion, not in the doctor’s office, they are better able to advocate for themselves. We are giving them, in a general sense, the empowerment to know that there are questions that need to be asked, and if they’re not getting these answers, to stand up for themselves. There’s so much untapped potential, and I think we have to be creative and look at this as an incredibly robust tool for both patient and physician education. We are just getting started with this.
“Twitter Social Media Is an Effective Tool for Breast Cancer Patient Education and Support: Patient- Reported Outcomes by Survey,” Journal of Medical Internet Research, July 30, 2015