The following is a guest blog post from one of our contributors, Sally James of Seattle, an active observer of, and participant in, health/medicine/science-related social media. She tweets as @jamesian.
Maybe you’ve heard about patients discussing breast cancer or other diseases on “chats” in social media. Whether you are fluent in the language of Twitter or not, the thousands of people who meet on that social media platform on a weekly basis are an important trend. They don’t just talk about cancer, but diabetes, mental illness, and hundreds of other health issues.
Physician Matthew Katz, a radiation oncologist, thinks this trend is so important that he’s conducted research on it and presented a poster (about hashtags) to the recent American Society of Clinical Oncology conference earlier this month. Katz and a team of others gathered information about how cancer is discussed in these “chats.” The word “hashtag” refers to an identifying marker or word, for example, #bcsm, which people use to find each other to chat on Twitter. BCSM stands for “breast cancer social media.” You can read a list of many hashtags here. Some hashtags feature organized weekly live discussions. Some have websites you can visit – even if you aren’t on Twitter.
What Katz and others are wondering: Do recently diagnosed patients use Twitter to help them make treatment decisions? Who participates and what is the quality of information there? Do social media chats perpetuate myths and bad information, or does the lively debate online help get higher-quality information to people who need it? What impact does conversation itself have on health literacy?
Katz himself participates online. His Twitter address is @subatomicdoc.
“Our hypothesis is that cancer-specific hashtags are a promising way to facilitate access to accurate health information and positive interactions. Our aim was to retrospectively evaluate Twitter use of the Cancer Tag Ontology (CTO) and the types of users putting these hashtags into tweets,” he wrote on the poster. The research has not been published, just a poster that hints at some results.
Katz uses the analogy of “interactive radio” for these Twitter channels that people can tune into when they want information. He doesn’t know what will turn out to be the ideal form for disease-specific groups. Some have been organized by patients, some by teams of patients and doctors, and some by institutions like hospitals or research centers. Read more at his blog post here.
One woman who knows this territory is Alicia Staley. She is both a patient, with a history of Hodgkin’s disease and breast cancer, and a professional strategist for startups in health at Akari Health in Boston. She sees the platform as a place where cancer survivors connect with a wide variety of other people – researchers, physicians and caregivers. “These connections offer the chance to learn more about a disease and uncover “hidden” information or connections.” She called it an “education empowerment” platform.
As moderator of a recent BCSM Twitter chat, Staley helped guide the conversation by presenting a series of topics to the group for discussion, such as this one:
T3: How do we continue to grow as advocates? How do we support each other as we develop our strengths and focus on what matters most? #bcsm
— Alicia C. Staley (@stales) June 16, 2015
That tweet, in turn, generated responses from others participating in the chat, including this one:
— Sanford Jeames; DHA (@JeamesSailor) June 16, 2015
Cynics may label Twitter conversations as one more place for commercial enterprises and the “medical-industrial complex” to wield influence and try to sell products or ideas. Most of us who have participated in well-moderated chats see the participants quickly dismiss anyone with an agenda.
Self-policing works well at dismissing commercial interests, Staley said.
“When you use social media on a regular basis, it becomes very easy to tune out the needless marketing pitches. As for medical salespeople – I’ve yet to see any major campaigns that have caused any disruption in my streams. Keep in mind, the networks we participate in are self-selected. If I don’t want to follow a pharma company or medical device company, I don’t have to. When sales pitches or promotions monopolize a hashtag, the communities are very good at self-policing and reaching out to shut down any extraneous postings,” she said in an email interview.
Katz and his collaborators looked at selected hashtags on Twitter and found this breakdown of who was talking. “In the cohort, 11% were patients, 20% doctors, 3% non-doctor healthcare professional, 32% individual, 30% healthcare organization, 1% other organization, and 3% spam.”
Further study is needed, he said, to decide if using hashtags improves access to “accurate information or clinically relevant patient outcomes.”
One researcher on health literacy, Sandra Smith of the University of Washington, has commented that people absorb information by discussing it “at the kitchen table” and perhaps some online communities provide a place for that kind of digestion of information. Katz also said some people may learn by interaction.
While it’s too soon to tell where all this talking will eventually take us, many physicians, patients, and advocates say the conversation is well worth monitoring.
Editor’s note: And now, since this is the first time we’ve been able to quote singer/songwriter Harry Nilsson on this site, we offer a YouTube clip to support our headline, “Everybody’s talking at me.”