As a newly minted cancer researcher and leukemia doctor who sub-specializes in rare hematologic malignancies, I was actively searching for novel ways to raise awareness in the general public about the cancers that my patients have and to connect with others interested in rare disease fields. Moving beyond the classical, already established research venues and medical conferences in our field, I found the augmented vehicle for information gathering and exchange that I was looking for in the form of active engagement in social media, in particular, the platform known as Twitter.
Twitter is a dynamic micro-blogging site that enables users to participate in real-time communications in the signature format of 140-character messages (known as "tweets"). This form of social media has completely transformed my approach to understanding, interacting with, and contributing to my research field. Among the many wonderful reasons to participate in social media, which include expanding one's learning of a field, communicating and networking with colleagues, disseminating real-time information from medical conferences, contributing research updates, opinions, or questions to all involved in a field, one that was very important to me was the opportunity to highlight rare diseases that had limited information (or mis-information) available online (Cell 2015;162:233-4, Oncology (Williston Park) 2012;26(9):782, 784-5, 791, Am Soc Clin Oncol Educ Book 2015;206-11). As with any new form of media/technology, it is recognized that this novel method of communication represents an unprecedented arena for information exchange, with its understood (and, additionally not yet fully understood) pitfalls, too (Semin Oncol 2015;42:764-71).
With all of this in mind, my goal was to start a Twitter medical community, a place where all healthcare stakeholders involved in a field or disease type can participate in an ongoing discussion. As it can be overwhelming at first wading into the waters of Twitter, I set out with a plan that I gathered from my more experienced social media colleagues that I wanted to share here:
* Finding your Twitter mentor
* It's okay; it's not as much of a time commitment as you think!
* Find Twitter collaborators
* Found your Twitter medial community under a healthcare hashtag category
Finding your twitter mentor
I cannot emphasize how critical this is. Like any new venture in our field of academic hematology/oncology and research, an experienced, patient mentor is one the pillars to a successful research career (J Clin Oncol 2013;31:811-3). I believe the same applies to the field of social media in hematology. For me, this was Michael Thompson, MD, (@mtmdphd), Medical Director, Early Phase Cancer Research Program, Aurora Health Care, Milwaukee. Considered by many in our field to be one of the pioneers of hematologists on social media, his influence, guidance, and research collaboration has been one of the keys to my understanding of leveraging the most social media has to offer on behalf of our patients, our research colleagues, and all involved in the field. A Twitter mentor can help you start a professional account, connect you to key opinion leaders in your field on Twitter, and introduce you to Twitter ettiquitte (PLoS Comput Biol 2014;10:e1003789).
It's okay; it's not as much of a time commitment as you think!
Who has time nowadays, in the midst of a busy practice, to adopt yet another new technological something or the other/potential time-wasting thing? I get it. We all have zero time for something new. ZERO. These appropriate concerns are addressed nicely in the how-to-guide by Thompson et al (Curr Hematol Malig Rep 2015:10:405-12). The hematology provider can use Twitter as a source for news information in the field (news aggregation), following the major journals (most of whom now have an active Twitter presence); or, as elaborated by Navneet Majhail, MD, in the article "@BldCancerDoc, Or How I Learned to Stop Worrying and Love Twitter" (ASH Clinical News 2015;1(3)), the academic hematology researcher can find small pockets of time via using a smartphone with the Twitter app while waiting in line, for example, to tweet about a new article (either one's own research group findings or work from others).
Find Twitter collaborators
In order to found a new Twitter medical community, I needed research collaborators with a mutual interest in this emerging field. With the help of a multidisciplinary, multi-national group of colleagues (@mtmdphd, @mpdrc, @vikas_gupta_1, @jjkiladjian, and @audvin), I was able to start a new hashtag: known as #MPNSM (Myleoproliferative Neoplasms on Social Media). It was officially founded just after the American Society of Hematology meeting in December 2014 (Curr Hematol Malig Rep 2015;10(4):413-20. After the first year since the development of this new community (January 2015-March 2016), there were 513 unique Twitter users who tweeted using the hashtag #MPNSM for total of approximately 5,000 tweets, with the number of new users growing over time (Curr Hematol Malig Rep 2016;11:456-61).
Based on the positive feedback I received from founding #MPNSM, I next turned my attention to another rare hematologic malignancy in which I treat patients and perform dedicated clinical research in- blastic plasmacytoid dendritic cell neoplasm, or BPDCN. I assembled another group of colleagues, some from our previous experience with #MPNSM, (@lane_andy, @vikas_gupta_1, @mtmdphd) to help me form #BPDCN, for patients, caregivers, medical providers, and researchers involved in the field of BPDCN. According to http://www.symplur.com analytics, within the first month of its conception (April-May 2016) there were 91 tweets from 31 unique participants, and this number continues to grow in its first year (Curr Hematol Malig Rep 2016; doi:10.1007/s11899-016-0340-3). For a historically rare disease with limited information such as BPDCN, the Twitter hashtag has provided a route for direct information, medical and research updates to patients and others interested around the world.
Found your Twitter media community under a healthcare hashtag category
This final part of establishing a new Twitter media community has been streamlined over the past 3 years by hematologists/oncologists in our field. As developed by Matthew S. Katz, MD, and Patricia F. Anderson, MD, and team, hashtags, or "Twitter categories" specific to cancer-specific categories, were created en bloc, denoted as the "Cancer Tag Ontology (CTO)" project and registered with Symplur (http://www.symplur) in 2013 (J Clin Oncol 2015;33:suppl abstr 6520). Since then, many dozens of new healthcare hashtags have been proposed and implemented via this user-friendly online process. The process I have outline above, and this novel CTO-inspired methodology has provided an orderly way to group cancer disease areas for stakeholders in a helpful format, has created a fantastic archive for data mining and research studies, and has enhanced our interaction in our respective fields, especially for those of us who work in rare cancer fields, to help "filter out" the "noise" online and concentrate on connecting, educating, learning, and networking on Twitter.
NAVEEN PEMMARAJU, MD, is Assistant Professor, Department of Leukemia, The University of Texas MD Anderson Cancer Center, Houston.