The following is a Q&A* with Charlie Blotner and Liz Salmi, founders of the #BTSM Twitter Chat. The chats take place the first Sunday evening of each month at 6pm PT/9pm ET.
They collaborated on the answers, which have been lightly-edited for length and clarity.
Q: For the non-social media savvy in the audience can you explain the concept of hashtags and how designated hashtags can support online community engagement and interaction?
LIZ: Hashtags are a way to aggregate conversations on particular topics, and are used most commonly on Twitter and Instagram. And on Twitter, when you only have 140 characters to compose a message, hashtags are a crucial strategy for reaching niche audiences.
To reach the brain tumor community, we created #BTSM, which stands for Brain Tumor Social Media. #BTSM was inspired by what was happening in other healthcare communities on Twitter, especially #BCSM, breast cancer social media.
Today, there are hundreds of hashtags associated with healthcare topics and most are being organized on a website called the Healthcare Hashtag Project.
Anyone, anywhere, can tag a tweet using #BTSM to reach an audience of patients, clinicians or advocacy organizations on Twitter. Current contributors include: MD Anderson, National Brain Tumor Society, International Brain Tumor Association, National Cancer Institute, American Society for Clinical Oncology, and Mayo Clinic.
Q: What inspired you to create/begin using a specialized hashtag to index tweets related to brain tumors?
LIZ: The #BTSM hashtag community was inspired by the breast cancer community–which uses #BCSM.
#BCSM began in 2011 as a conversation on Twitter, and today is the largest disease-specific community on Twitter. (Learn more about #BCSM here.)
We noticed people in the brain tumor community were participating in the breast cancer tweet chats to get support, and we realized there was a need for a brain tumor-specific group. So we started one. (Note: The full story can be found here.)
Q: How were you able to spread the word about the #BTSM hashtag and get broad adoption/utilization of it with others who were interested in engaging online in regards to issues and information related to brain tumors?
CHARLIE: This hashtag was something the many in the community were longing for, in a certain way. People wanted to talk about their experiences but weren’t getting the support they needed and having the conversations they were looking to have in the (few) in-person support groups that existed, whether that was due to demographic or geographic differences or the scarcity of these groups in general.
Without a doubt, some people are nervous to share personal information on the Internet via a platform like Twitter, especially information related to their health when it’s something that could be used against them at work or in the hiring process. Topics related to insurance and job disclosure are definitely sensitive in nature, so some people in #BTSM create anonymous Twitter accounts to work around this situation.
There are quite a few brain tumor support groups on social media (e.g., Facebook Groups), and people who participate in those groups aren’t necessarily the same people who have come to adopt Twitter as a space for those same discussions. Still, we have made a point to create Facebook events for each #BTSM Chat so that we can share information about the chats on a platform that makes sense to those patients and caregivers. Additionally, we have had help from National Brain Tumor Society, publications in JAMA Oncology and the International Brain Tumor Alliance, and elsewhere to remind people that we exist as a resource for them.
Q: What led to the idea of building on the hashtag to actually create a monthly #BTSM Twitter Chat?
CHARLIE: We noticed that the breast cancer community had developed an incredible network and resource through their weekly #BCSM tweet chats as a way to unite, provide psychosocial support, and share information, research and resources for their community online.
The brain tumor community did not have a corresponding online chat, nor do many of us have access to in-person support groups. For about six months, people tweeting with #BTSM talked about wanting a chat and community like #BCSM, but no one acted on this desire. Finally, Liz and I decided that if no one else was going to step up and take the lead, then we would.
Q: How has the #BTSM Chat grown over time?
CHARLIE: We started off with few participants tuning in each week back when we were a weekly chat. We eventually scaled back to a monthly chat after the first year or so for a few reasons. Particularly, we agreed that a monthly chat also made more sense for the brain tumor community. There are less of us than the breast cancer and other patient communities online, and not all of us have the capacity to focus on a computer and participate in these chats any given day/week.
Now, years later, we have researchers waking up in the middle of the night just to participate from the United Kingdom. We are also aware that national organizations and pharmaceutical companies are paying attention our conversations. Cancer centers are promoting research and articles through the hashtag, and most importantly: patients have found us from around the world. We are, and will always be, a free resource for the brain tumor community.
Q: What are some of the topics you’ve covered on these chats over the last few years?
CHARLIE: The topics we’ve discussed during #BTSM tweet chats over the past several years have covered a wide range of themes, and we’ve tried to have them be led by the community’s interests. We conducted a community survey at the start of 2016 to not only learn more about the demographics of chat participants, but also about what people thought was missing in our topics, or what they wanted to loop back around to and learn more about.
I think the difference in each month’s topics is what’s attractive to participants, because some people are more interested in research, like Liz, whereas others are more interested in the emotional support side of things, like me (Charlie). Oftentimes there is a crossover between those two, with topics like the World Health Organization’s Classification of Tumors of the Central Nervous System that almost solved an identity crisis of sorts in the community. With the release of the new classifications, patients were unsure where they fell in the brain tumor world if their diagnosis had been erased. Each of the topics discussed during #BTSM tweet chats entail their own level of education too, and, in a sense, address anxieties in the community that might be going un-talked about or noticed elsewhere.
Conversations about what people wish they knew before their craniotomy, or how they navigate the holiday season with sensory overload, are topics that might not typically come up at the dinner table or when spending time with friends. We’ve also looked at the role of storytelling in survivorship, in addition to when and how people choose to disclose their diagnosis to friends, dating partners, or in the workplace. This was a topic that, while seemingly simple, was actually laced with insurance, human resources, and rejection difficulties. Communicating this information in the waiting room comes with its own challenges, and we have been fortunate enough to have physicians, researchers, and other experts in radiation oncology, neuro-oncology, in addition to other topic-specific fields join us and discuss the role of digital communication and understanding health care instructions, the basics of radiation, nutrition, exercise and physical activity, mental health, and more. While including experts in varying scientific fields is important to us, we have also made sure to draw on the lived experiences of chat participants, learning from their experience and opinions on what it’s like to use treatments options** like, say, the Optune device in Ask-Me-Anything formats.
Q: How can someone participate in these chats?
CHARLIE: Chats take place on first Sunday evening of each month at 6pm PT/9pm ET. Liz built a “How To” guide for participating in a chat, including even a step-by-step guide for logging into a twitter-focused chat room. People can view the full instructions here.
Q: Why do you believe it is important to have this forum for those impacted by brain tumors? How can social media be a force for good and change for the brain tumor community?
CHARLIE: The Internet is a powerful tool. Anyone from around the world can access #BTSM as long as they have a smart phone, laptop, or access to a local library with an Internet connection. Whether they are in the ICU one-day post-craniotomy, or are at home decades later, they can join in the conversation if they so wish. That’s pretty incredible.
Twitter also flattens the hierarchy of healthcare. Patients, caregivers, providers, and researchers all have the same access to the number of characters allowed in a tweet, access to direct messages, and the type of information that can be viewed under the hashtag. Twitter doesn’t care if you have been to medical school or if you have never graduated from high school. Twitter is a way for people to connect and share information with each other that might not be being accessed or heard elsewhere.
I’ll never forget a tweet that was shared during a chat in 2013. I still have a screenshot of it on my phone. It reads: “I’ve learned more about my [brain tumor] tonight than I have in the past year.” That’s really saying something.
Q: What do you think participants can/do get out of participating in these chats? And what do you, as organizers, take away?
CHARLIE: I’ve always thought that I want to help as many people as I can, for as long as I can. To me, this chat means making sure people are able to find a support network and access information about their diagnosis and treatment from other people going through the exact same thing so that they feel less alone.
It took several years for someone to connect me with other people my age who had been diagnosed with a brain tumor, and a lot happened in my life during those first few years post-diagnosis that would have been much less scary and more manageable if I had had someone else who knew what it was like to talk to.
Healing from my surgery – which was an awake craniotomy – was less scary to navigate because of Liz. If #BTSM tweet chats had existed prior to my surgery, I may have known other people who too had had an awake craniotomy instead of going through that “alone” in a sense, as well. Perhaps most importantly, often times we see a brain tumor portrayed as a death sentence on TV, and that’s not necessarily the case. In the age of social and digital media, we have to be mindful of the messages that we send, and realize that we have the power to change those narratives.
Q: What other current platforms do you feel are important for patients to engage and share information?
LIZ: Personally, I get the most help, support and information from #BTSM on Twitter. But I am biased because I get how Twitter works and I feel comfortable with the platform.
There are many Facebook Groups dedicated to brain tumors, and they function like virtual support groups. Some of the groups tackle brain tumors from a general perspective, while others can be very tumor-specific. For example, I am a member of a low grade glioma group — how about that for specificity?
Users of Instagram have also taken to using #BTSM to share photos from hospital visits and promote fundraisers for NBTS.
Also, Reddit, surprisingly, has a brain cancer subthread.
It is important to recognize that all of these platforms — Twitter, Facebook, Instagram, Reddit, and anything else to be invented in the future — have their own culture. I’d sum it up as: Facebook=support group. Reddit=specific or obscure questions. Instagram=pure sharing of emotional moments in life. Twitter=the absence of the hierarchy in healthcare, with patients and professionals connecting on the same playing field.
Q: How do you think people can connect online advocacy to “real-world” outcomes and action?
LIZ: A great example for the next frontier is something that happened just two weeks ago:
A Yale researcher studying the IDH1-mutation tweeted a link to his most recently published study and tagged #BTSM. One day later, a patient tweeted about the same study with concerns and questions and tagged #BTSM. I was searching the hashtag and was able to connect the patient with the researcher so the patient was able to get to the source for answers.
That exchange inspired me to reach out to the researcher about an idea I have about simplifying published research abstracts into something “actionable” for laypersons. The researcher thought it was a great and idea…and now we are working on this TOGETHER as a project that we will pitch to medical journals as a standard.
CHARLIE: Further, we are big believers in using our stories and lived experiences to influence those who have more perceived power in health care and policy than we as patients do. While I have never been able to attend a Head to the Hill event due to timing of the lobbying event with my school schedule, I have been able to speak at various conferences and inform how providers and researchers interact with patients and direct research. To me, this ensures not only that future patients will receive better care during appointments and when participating in research studies, but also that the actual research related to brain tumors itself will focus on not just (vitally important) treatments, but also quality of life.
LIZ: Online advocacy can also make people aware of in-person advocacy opportunities. Head to the Hill with National Brain Tumor Society, for example, is one of the most impactful advocacy events a person can take part in in the brain tumor community. I am attending this year –It will be my 5th time! But I recognize not everyone can take time off from work or school to travel to Washington, D.C. I think it is important for organizations like NBTS to recognize now everyone has the capacity to attend in-person events and design around that — design social media solutions regular people can take part in using mediums with which they are already comfortable using, such as Twitter and Facebook.
Liz Salmi is a communicator and advocate for transparency and openness in healthcare. She blogs about living with brain cancer at TheLizArmy.com.
Charlie Blotner is a social worker in training pursuing an MSW at the University of Washington with a health concentration. Charlie is dedicated to helping people be better informed about their health, research, policy, and the future implications of their disease.
*The views expressed in the Q&A above are those of the respondents, and not necessarily of NBTS.
**NBTS always recommends that any media advice obtained/received online be discussed further in-person with a licensed physician/neuro-oncologist.