Building a Home: Nephrology Twitter Community Creates Disciplined Spaces for Discourse
Through well-planned initiatives, nephrologists used Twitter to turn the sprawling landscape of social media into a home for productive conversations.
When Dr. Matt Sparks, a Duke nephrologist, joined Twitter over a decade ago, social network coverage of nephrology looked vastly different from that of today. Before the nephrology Twitter community, abbreviated to Neph Twitter, was started, much of the online conversation about nephrology happened in the comments section of blogs. This had a major drawback: the conversations happened in tiny silos and if you didn’t know there was a conversation going on below a given blog post you were out of luck. Sparks saw an opportunity with Twitter “to expand the dissemination of information in a way that was not confined to textbooks and journal articles.” In a Zoom interview, he explained that Twitter was unique even amongst other social media platforms because people who did not know each other could easily discover each other’s work and have multi-participant conversations. “Twitter was an interesting medium,” Sparks said, “because it did allow a two-way conversation that was public [as compared to other platforms].”
According to the American College of Physicians, nephrology “focuses on the diagnosis and treatment of diseases of the kidney.” According to Nephrology News and Issues, while nephrology is by no means a small field, it exists in a silo, with a dearth of conversation in general medicine about nephrology topics and innovations, which in turn leads to ignorance in the greater population about how to maintain kidney health and deal with kidney disease. The field is a perfect fit for the social media platform Twitter. Founded in 2006, Twitter allows individuals to post “tweets:” short messages of text, photos, links, and videos. Anyone, provided the original poster has a public account, can view those posts and submit their own replies, which appear below the original post. People who don’t follow a particular user can also access the information if it includes a specific hashtag like #medtwitter or #Nephmadness. While Twitter has 330 million monthly active users, #MedTwitter is estimated by participants to have around 250,000 users, with #NephTwitter being a smaller subset of that community having around 25,000–30,000 users.
Sparks participated in many initiatives to organize and enhance the #NephTwitter space. Around six years ago, as a part of the American Society of Nephrology, Sparks was a member of the Social Media Committee and promoted the sharing of pictures and content from nephrology conferences on social media. This allowed these discussions to be held with a wider audience besides those who have the resources to attend conferences, which are the center of discussion and innovation. In addition to expanding the conversation beyond academic physicians, Sparks started a (sort of) online conference called Neph Madness. Organized in March 2013 paralleling the March Madness basketball tournament, doctors used a separate website to create a bracket of nephrology concepts. The concepts were then discussed and winners were decided on Twitter using #NephMadness. The yearly nephrology tournament has continued, allowing the Neph Twitter participants to come together and have a coordinated discussion about up-and-coming nephrology ideas and innovations.
In addition, in April 2015 Sparks was a key player in the creation of NephJC, which is described as “a journal club that uses Twitter to discuss the research, guidelines, and editorials that drive nephrology.” This club uses Twitter and the #NephJC hashtag to meet every other week at an agreed time. The group posts thoughts about prominent articles or research selected by the executive team of NephJC (see image 1). This dissection of articles not only brings these ideas to the forefront of #MedTwitter, but also helps disseminate information on the most important details and ideas. Finally, to get more nephrologists trained to use social media more efficiently, Sparks helped create the Nephrology Social Media Collective Internship — a social media internship program for nephrologists to communicate ideas in medicine. For all these initiatives, said Sparks, “the goal is that we need to embrace this space and own it and not let it just develop haphazardly.”
It’s hard to estimate a size for the NephTwitter community. Some key reference points include Sparks’ almost 20,000 followers, over 1,000 entries into the NephMadness bracket, and NephJC’s almost 30,000 followers. NephTwitter is not only limited to young academic physicians. “It’s actually the older individuals that are craving information from a reliable source,” says Sparks. According to Sparks, many private practice physicians relish the ability to stay abreast of the cutting edge in nephrology through NephTwitter as they do not normally have access to journal clubs or conferences, and as such have previously had to rely on biased sources like dinners hosted by pharmaceutical salespeople. Sparks says that the Twitter space has also allowed for more collaborations between doctors and patients with patients joining talks, having tighter connections to patient advocacy groups, and facing accountability from patients about clinical trials that may not be patient-centric. Matt says the participation of patients has “made us more aware of the nature of the work that we do and the stakeholders that are involved.” Sparks wants to expand this further by directly teaching patients how to use social media so that the patient voice can be heard. “You have to have a voice,” says Sparks. “and if you don’t have a voice, then you don’t really exist, unfortunately.”
Sparks says it takes conscious effort to to include voices that have historically not been a part of the medical conversation. For example, there has been a recent push to get rid of excessive jargon in NephTwitter. According to Sparks, this has its pros and cons as it could also exclude topics that may be considered more niche and specialized from being brought to the forefront of medical conversation, like new therapies or hospital-specific policies. Sparks says, “When you make content, you have to make some decisions like who’s your audience going to be? And it’s really challenging to hit physicians and patients at the same time.”
One other significant challenge: “Twitter can be a polarizing platform,” Sparks says, “often only catering to the loudest voices” — frequently people who come from a more privileged background. As negative and controversial opinions tend to get the most views, it is sometimes hard to make sure that all voices and opinions are being heard while trying to promote productive discussion, but the organized nature of NephTwitter and its initiatives limits too much sway in any direction. One way that leaders in NephTwitter have worked to accomplish this goal is by being conscious of which identities they are promoting in terms of their social media internship and the authors they discuss. The structure of NephTwitter allowing for everyone, including those that don’t have any experience in the medical field, to feel comfortable expressing their opinions is one of the best parts of the space according to Sparks. “The people that are in it, like really want to be in it. It’s like a passion for them.”
