Several months ago I received an invitation to speak at a breast cancer conference—the topic was “Engagement and Empowerment.” It was a topic that was not new to me; I had discussed it earlier in the year at the National Consortium of Breast Centers Annual Meeting as part of the survivorship session. However, it was one of the times in my career where my talk did not match what I had wanted to accomplish. Fortunately, my dear friend Barbara Rabinowitz understood my message and agreed it could be delivered somewhat better. After spending some time talking to her, I decided to change it almost entirely.
I realized then that this concept of engagement leading to empowerment was a message I have heard loudly and clearly—not on national news or even within the halls of academia. It was a conversation brewing on social media—a cacophony of voices calling for more access, better information, more direct involvement in their care, and to generally become a part of the health care conversation, rather than treated as a passive recipient. It also occurred to me that this discussion had not yet infiltrated beyond social media. That is, there are still colleagues and even patients unaware of what “patient engagement” is, let alone how to get “engaged.”
In preparing for this talk, I asked myself: "What have you gotten out of social media—blogging, tweeting, and hanging out (on Google)?" The first thing that came to my mind was: connections. I have met so many amazing people who have become collaborators and colleagues—although virtual, the connections we have developed are real, and the conversations online have opened my mind to new concepts, new ways of thinking about issues, and fresh perspectives. In this column, I thought I would introduce you to three women who have joined my social network circle through Twitter, and to each, I asked to explain for themselves, “Why Twitter?”
I joined Twitter in May 2010. As the Chair of the Communications Committee for the American Society of Breast Surgeons (ASBrS), we were looking for ways to use social media to increase our reach. I had no experience with Twitter so wasn’t really sure what to expect, but I started following some medical organizations, breast cancer advocacy groups, and patients with breast cancer. I was unsure of my role as a physician until one night I stumbled upon a conversation that two women were having regarding their mutual friend, who had just been diagnosed with breast cancer. As I watched the conversation unfold, I was a bit horrified to see that they were debating whether or not their friend should obtain an MRI, have a mastectomy, or get a second opinion. Why did these women feel they had to take to Twitter in order to have some basic questions answered? I joined the conversation, letting them know I was a breast surgeon and would be willing to offer guidance. I then became involved in an email conversation with one of the women. It became clear that her friend had a lot of unanswered questions. Based on her zip code, I gave her the names of several ASBrS members in her area. A few weeks later, I got a follow-up email from the patient’s friend—the patient went for a second opinion, underwent successful breast-conserving surgery, and was grateful for the information that was passed along via Twitter. It was then that I realized how physician presence on social media could have a profound impact on a patient. I was hooked.
I keep coming back, especially to the #BCSM community, because the need for education, guidance, and support is ongoing. In addition, participating in patient communities gives me a different perspective on the patient experience compared to my office practice, and I believe the insights gained have made me a better physician. •
Bernadette Keefe, MD, Former Clinical Associate Professor of Radiology and Obstetrics-Gynecology at UNC Health Care; Current Digital and Social Media Consultant, co-host of #hcldr (health care leadership) tweetchat:
In 2000, my practice as an academic radiologist was curtailed due to musculoskeletal issues and extensive back surgery. I joined Twitter in 2010 (@bespeake—not active) to specifically learn about sports marketing and administration (which was my son’s college major). Back then, he would live-tweet his sports business classes, but in addition, I also followed multiple relevant professors, undergraduate, and graduate school programs. I soon discovered that for me, Twitter was quintessentially suited to the dissemination and acquisition of information.
In 2011-2012, I added political and news tweets to my social media diet; at that time I was not aware that health care had a robust Twitter presence. In 2012, I fell due to balance issues and, while recuperating from pelvic fractures, delved into online health information for help in rehabilitation, as I was homebound on a walker.
In June 2013, I started my second Twitter handle: @walkeredu, “The Walker Education Project,” to represent my efforts to develop a design and technological upgrade to the walker mobility aid and provide educational resources. The walker project is in the research and development phase now. One month later, in July 2013, I launched my current handle @nxtstop1 as my personal/professional Twitter home.
In January 2014, after introduction to @symplur and many, many hours on Twitter, I have realized there is an abundance of quality information and resources there: major medical conferences, cross-disciplinary health care conferences, tweet chats, forums, journal chats (both domestic and international), conversations with medical and other health care professional colleagues around the world, opportunities to follow multiple medical organizations, medical and healthcare journals, and the invaluable opportunities to intersect with other fields, patients, the health care technology /digital health world, the executive suite, etc. It is evident to me that every aspect of health care and medicine is represented on Twitter, and equipped with my personal handle @nxtstop1, I have since become a full-time social media aficionado and have traveled in four parallel tracks on Twitter: (1) the curation of medical conferences/health care events; (2) outreach via tweet chats as a co-host of the weekly #HCLDR (health care leader) tweet chat; (3) as an advocate with a concentrated focus in the aging and mobility and technology spaces; and (4) to collaborate with my colleagues in radiology, my mother field in medicine. •
I joined Twitter in 2010 when I began working at a national cancer nonprofit and felt the need to "go where the people are" and learn how to engage with our constituency online. What I found, especially on Twitter, were some incredible conversations about the patient experience and improving things in health care. I also found that by following key influencers, I gained access to the latest research and to global experts. Personally, the opportunities that have come my way to contribute valid, reputable information to the health information that is going around has been very rewarding.
I think one of the transformative things about Twitter is the insights that can be gained into the patient perspective by having online discussions. And in turn, when health care professionals participate, it gives others a view back into the "other side." Twitter chats get you outside your bubble and expose you to a mix of perspectives that is hard to find anywhere else and to participants from fields and backgrounds you may not otherwise have regular contact with or access to.
Collaboration opportunities are another great benefit to engaging online. Through relationships I've made on Twitter, I was able to co-found a gynecologic cancer community and contribute to projects helping patients and families become more empowered in their health. I use my digital presence to advocate for the patient voice and to share important information about women's cancers. Going online has helped me connect those seeking help to good information and resources. •
These are three women who have enriched my professional life by being a part of conversations that I probably would never had in real life (IRL, in social media). Our communications have not taken place in private, but in public—with a call to join in, to comment, to react, to let your voice be heard. For Deanna and Christina, it has been not only to become a member of a social community, but also the opportunity to watch them develop. And for Bernadette, her passion has become a mission, and a newfound career. As medicine evolves further, it is likely that this movement towards increased engagement will grow, beyond the confines of social media, and this may lead to changes in health care as we practice today.
So, as I prepared my talk, I saw as the objective to bring the voice of social media to more traditional forms of communication—not only for the sole purpose of “alerting” my colleagues to this rich conversation, but to invite them to connect with a world that, for those not on social media, remains unexplored.
Note from the Editor: This is Dr. Dizon's 100th post on ASCOconnection.org. On behalf of the ASCO Connection Editorial Board, readers, and staff, we thank him for his ongoing dedication to sharing his experience in the human side of medicine. Read more about Dr. Dizon's blogging journey.