Twitter Provides Information about Rare Diseases to Physicians, Patients
Physicians who treat rare diseases often find it difficult to track down research developments and news pertaining to those diseases. For example, Naveen Pemmaraju, M.D., an associate professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center, treats patients with myeloproliferative neoplasms (MPNs) and blastic plasmacytoid dendritic cell neoplasm (BPDCN). In the past, he found it time-consuming to sort through the medical literature to find the latest conference abstracts about these rare conditions. He found a solution in the microblogging social media forum Twitter.
“Compared with email and other social media platforms, Twitter is the easiest way for doctors, especially hematologists and oncologists, to stay informed,” Dr. Pemmaraju said. “I follow the lay press, medical press, and medical journals on Twitter, and I check my Twitter feed every morning. In 5-10 minutes, I can find out what’s going on in my specialty and in the world at large and can mark items for further reading and investigation later on in the day.”
To find or share messages, or “tweets,” about a particular topic, Twitter users create hashtags, which comprise the # symbol followed by a word, phrase, or abbreviation with no spaces. Hashtags are not case sensitive and are simply typed into tweets to make them easily found by a search.
Cancer-related hashtags can be general, such as #EndCancer, which is used by MD Anderson faculty and publications; or disease specific, such as #BCSM (breast cancer social media), #lymphoma, and many others. In 2014, Dr. Pemmaraju saw that no hashtags existed for MPNs or BPDCN, so he created the hashtags #MPNSM and #BPDCN. Since then, the hashtags have been adopted by a plethora of physicians, researchers, patients, and advocates. In 2017, Dr. Pemmaraju and colleagues analyzed the use of these and other disease-specific hashtags and published their findings in Seminars in Hematology (2017;54:189-192).
Dr. Pemmaraju describes #MPNSM and #BPDCN users as self-curating groups. “There’s less than 1% spam, and you know who’s tweeting,” he said. “For these rare diseases, if there’s an advocate group meeting or a new paper that comes out, I’m going to see it on Twitter long before I find it anywhere else.”
Twitter also provides a platform for physicians to share information and connect with other professionals. “I’ve formed research collaborations with people I met first on Twitter and later at conferences or other events,” Dr. Pemmaraju said.
“It’s an exciting time for patients and providers to get connected on social media,” Dr. Pemmaraju said. “It’s revolutionized the way I take in and contribute original information in my fields of interest.”
On Twitter, you can follow Dr. Pemmaraju at @doctorpemm and OncoLog at @OncoLogNews and @OncoLogEspanol. To find health care-related hashtags, visit www.symplur.com/healthcare-hashtags.
OncoLog, February 2018, Volume 63, Issue 2
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