@SWOG Twitter Bio: “SWOG designs and conducts clinical trials to improve the practice of medicine in preventing, detecting, and treating cancer. Leading cancer research. Together.”
SWOG, one of the cancer research cooperative groups supported by the National Cancer Institute, is turning to social media to advance its work. The current SWOG grant includes a goal to use social media to enhance awareness of the group—specifically to improve clinical trial enrollment.
SWOG's social media working group is co-chaired by Michael Fisch, MD, MPH (@fischmd), Professor and Chair of the Department of General Oncology and principal investigator of the Community Clinical Oncology Program Research Base at the University of Texas MD Anderson Cancer Center, and his MD Anderson colleague, Mark Lewis, MD (@marklewismd), Assistant Professor in General & GI Oncology.
For this article, Fisch and SWOG Chair Charles D. Blanke, MD (@SWOGChair) discussed their social media plans for the group.
Why did you decide to commit to social media by including a specific aim in your NCI grant?
Charles Blanke, MD: “One of our goals is to reach out to adolescents and young adults with cancer to increase their ability to participate in clinical trials, and it came to my attention that one potential way to reach this audience was through the use of social media. I knew Dr. Fisch had expertise so I turned to him for advice, and he had huge ideas—well beyond patient recruitment—to include providing information to our patients, providing information to other physicians and the public, and helping make our staff aware of high-priority trials.
“I asked him to make a presentation about social media at a plenary session at our 2013 spring meeting, and I was unbelievably pleased because the room was packed. We had to continually move in new chairs as people kept trickling in through the door.”
Many physicians are reluctant to use social media like Twitter. Why do you think SWOG members will embrace it?
Blanke: “While we have people like Mike and Dr. Robert Orlowski (@Myeloma_Doc)—one of our committee chairs—who are active on Twitter, the fact is that most of our senior leadership did not have any experience. Mike did a fabulous job of helping us realize that it is easy to do and that it can help us accomplish well more than we originally planned, and he did get people who probably never had tweeted a single thing in their life to actively participate.
“So it started building and it has been embraced by all of our senior leadership.”
Michael Fisch, MD “Several SWOG members have been using Twitter for a while, but what had been missing was some sort of strategy to use Twitter as a group with a goal in mind. That started when Chuck put it in the grant and scheduled a plenary session about social media.
“There was not a bull rush to Twitter-land right after the plenary, by any means. But it certainly sent a message, and I think it made many SWOG members begin talking about social media, and people were more intrigued about it. A few of my SWOG colleagues at my institution were willing to let me come to their office and show them how to use Twitter. Before this, I doubt I would have been able to convince them.
“I knew if SWOG leaders like Lee Ellis (@recnac1) and Cathy Eng (@CathyEngMD) and Craig Nichols (@Testiscancer) started to send tweets, they might enjoy it and experience the engagement that social media can offer. [Ellis is SWOG Vice Chair for Translational Medicine; Eng is MD Anderson's principal investigator for SWOG; and Nichols is a SWOG executive officer.] They are influential, so others will start to think about tweeting as well.
“At the translational science symposium at our most recent SWOG meeting, Dr. Ellis gave a shout-out to what he had learned on Twitter and how he has enjoyed it. I think that will create a second wave of those who have been contemplating social media who are now willing to figure it out and participate.”
How will SWOG use social media to improve trial accrual?
Fisch: “Twitter is very useful in getting feedback from patients that you might not have known to ask for. This is not feedback from your own patients, but from people with a specific disease or their caregivers who have a perspective that physicians may not have—for example: What is their reaction to a trial concept? What are people concerned about? Sometimes through their engagement via tweets, you will get encouragement that lets you know you are on the right track or you will hear concerns or worries that can lead to a course correction that will help avoid accrual problems later. If there is a problem—for example, patients don't want to travel a long distance—you will start to hear it on Twitter because people will tell you.”
Blanke: “It is important to emphasize that social media is not a way for us to lecture at our patients about the importance of clinical research; rather, it is a way to open up a dialog for two-way communication.”
What are other examples of social media being used to advance clinical research?
Fisch: “The ECOG-ACRIN Myeloma Committee with Mike Thompson, MD (@mtmdphd) and Vincent Rajkumar, MD (@VincentRK) started a Sunday evening tweetchat and they regularly discuss open and enrolling trials. ECOG-ACRIN is using the hashtag #EAOnc and this harmonizes with #SWOGOnc to promote good cross-talk among the cooperative groups.
“SWOG's myeloma committee participation is led through Bob Orlowski, and he uses bitly bundles (http://bitly.com/bundles/o_e4k6dsvn8/4) to publicize SWOG's myeloma trials.”
Blanke: “Julie Gralow MD (@jrgralow) used social media to get patient input early in the design of a clinical trial, and that experience shows how this works so well. She asked the #bcsm community (www.bcsmcommunity.org) for advice on designing a trial to determine how to optimally screen for breast cancer recurrence, so Deanna Attai (@DrAttai) posted a survey on the BCSM website and tweeted about it using the #bcsm hashtag.
“That generated hundreds of patient responses, and prompted #bcsm participant Liza Bernstein (@itsthebunk) to write a blog post titled “Collaborative Medicine in Action” (itsthebunk.blogspot.com/2013/04/collaborative-medicine-in-action.html).
“Her post ended this way: ‘Surely this type of dialogue will help researchers design even better and more relevant studies. It certainly empowers survivors to join in the process. The ensuing dialogue gives me hope that our ideas and concerns will be seriously considered.’
“This is an example of what collaborative medicine, fueled and enabled by social media and technology, could look like.”
The full archive of Oncology Social Media Profiles can be found in this Collection on the OT website: http://bit.ly/OT-OncologySocialMediaProfiles