Our Mission: Explore the Effects of Digital Communities on Health
Social media gets plenty of bad press, much of it well deserved. But we think there’s also another story to tell, a healthy story.
Social media gets plenty of bad press. Depending on which pundit you stan — likely on social media, right? — the medium nurtures extreme views, facilitates insurrection, wastes hours, causes anxiety, discourages vaccinations, and creates echo chambers.
In this publication, students and faculty at Duke University, supported by Duke Bass Connections, document how communities on platforms like Facebook contribute to the health and morale of their members. We examine a range of communities, from NICU parents to individuals with autism, CJD, or TBI.
Digital health communities (DHCs) have emerged slowly over the last 20 years. As social media platforms sprouted, patients with chronic or orphan conditions began congregating online to pool knowledge, commiserate and agitate for attention and resources. These communities now range across disease-agnostic platforms like PatientsLikeMe, Facebook groups devoted exclusively to people with migraines, forums for people with sleep apnea, and community-centric podcasts about life with type 2 diabetes. Different groups use Twitter, Instagram, WhatsApp, Reddit, Snapchat and dozens of other platforms to share health information. And, looking beyond illness, groups focus on numerous wellness topics — longevity, keto dieting, biohacking, circadian rhythms, mindfulness, digital health monitors, and so on — that are ignored in conventional medical school curricula.
DHCs — which broadly rely on a range of tools like social media and digital communications, including apps and email newsletters — offer a revolutionary end-run around institutional medicine’s long-lived and deeply entrenched structure for discovering, integrating and propagating medical knowledge. On social media, researchers and patients now frequently commingle. Some communities have helped fund research or have performed research themselves: communities of sleep apnea patients helped hack and improve the data available from continuous positive air pressure machines; parents of eight children with a rare genetic disorder coalesced around a single blog post, then rallied to drive research that ultimately cured the disorder.
Beyond their immediate impact on people’s lives, DHCs may help steer medicine’s future. In popular histories of medical progress, discoveries happen in labs. But medicine’s direction has also been shaped by the successive types of media that have connected patients, doctors, researchers and manufacturers. In the 19th century, medicine shows traveled muddy paths between homesteads and villages to sell unregulated nostrums concocted by the showmen; in the 20th century, medical societies and journals pushed a steady diet of medicinal innovation to doctors who had a monopoly on prescribing drugs; in the second half of the 20th century, successive editions of the American Psychiatric Association’s successive Diagnostic and Statistical Manuals ruled how psychologically abnormal patients were treated. The path of medicine changed again in 1997, when drug companies started hawking their wares directly to consumers with TV ads, concurrently shifting research priorities from discovery towards broadening the applications of existing drugs.
Now, digital health communities are changing the trajectory and pace of medical innovation and practice. It’s no coincidence that the complete coronavirus genome was first announced in a tweet.
For their members, the existence and importance of digital health communities is so obvious as to be unremarkable. For people who don’t belong to a DHC, the phenomenon is invisible. Long after the emergence of DHCs, they’re unnoticed and undocumented by journalists, academics and medical researchers. We hope to change that.
