Digital Communities
As people look for new ways to connect during a time of isolation, digital spaces beyond social media are a destination for social interaction, community-building, and activism. Increasingly, digital communities are wielding the power of the collective to influence politics, the market, and culture.
Communities are the soul and engine of the internet, driving traffic and engagement since the early days of chat rooms, listservs, and forums, even before the web 2.0 era exploded internet use via social media and other platforms for user-generated content. That was 16 years ago, more than half the time the consumer internet has even existed, and the formats and business models that characterized web 2.0 are starting to feel a little dated. Digital communities are evolving–independent from social media platforms–and experimenting with new tactics, mediums, and potentials.
Communities are the soul and engine of the internet, driving traffic and engagement since the early days of chat rooms, listservs, and forums, even before the web 2.0 era exploded internet use via social media and other platforms for user-generated content. That was 16 years ago, more than half the time the consumer internet has even existed, and the formats and business models that characterized web 2.0 are starting to feel a little dated. Digital communities are evolving–independent from social media platforms–and experimenting with new tactics, mediums, and potentials.
This spring, digital spaces became the primary and desperately needed safe harbor for socializing and support throughout quarantine and distancing. As we discuss in-depth in Trend 4, people have been lonely: during the first few months of the pandemic, Omegle-like random video chats came back into style. Virus.cafe was one such platform, whose tagline was “Make a friend in 2 minutes.” Animal Crossing was a huge hit this year in part because it provided an alternative avenue for social connection and interaction¹–a sort of digital “third place,” more geared towards casual togetherness or hanging out than the purpose-driven and performative mechanics of conferencing software like Zoom. And around the world, digital platforms from Minecraft to Russia’s Waze-like navigation app Yandex became new sites for protests, rallies, and other forms of activism.²
One of the defining arcs of the last decade has been understanding how truly impactful social media can be. To a certain extent, in 2021 there is no such thing as a meaningful social movement that isn’t either catalyzed online or deeply shaped by the way it moves through social platforms. More and more, virtual communities of like-minded users have been realizing and intentionally wielding their collective power to influence significant outcomes in politics, popular culture, and algorithmic systems.
Perhaps the year’s most sensational example of this was when fan communities of Korean pop supergroup BTS organized, in collaboration and overlap with Gen Z TikTok user communities, to sabotage US President Trump’s campaign kickoff rally in Tulsa, Oklahoma. Last winter, Reddit forum r/wallstreetbets became so powerful, with 900,000 users moving in concert, that they affected the stock market.³ And QAnon, a community that began on social message board 4chan like the tea party and Anonymous before it, has grown into a global political force, with several supporters now having been elected to serve in the US Congress.
Communities can lend this immense power to individuals–like celebrities and influencers–or brands. BTS’s fandom, called ARMY, will stream their songs on repeat, often from multiple devices and accounts, in order to manipulate algorithms and keep the band at the top of the charts.⁴ The New York Times covered the successful experiments of a comedian and influencer named Melissa Ong to create a ‘cult’ out of her fanbase⁵ (here ‘cult’ meant choreographing her followers to manipulate TikTok’s algorithms). These activities are distinct from traditional influencer dynamics; they’re intentional, not organic; participatory, not individualist.
There’s an idea that brands should be harnessing and wielding this kind of community influence,⁶ and paid communities are currently hot as a trending business model in Silicon Valley founder and VC circles.⁷ Subsequently, new tools are emerging–such as Circle, Mighty Networks, Zyper, and Peerboard–to help companies, brands, or creators coalesce and support communities.
But the power of digital community is a double-edged sword, and wrangling it can be incredibly difficult. Facebook has faced (and lost) lawsuits over causing PTSD among its content moderators, and Twitter has been criticized for years for allowing harassment to thrive on its platform. As a format, social media undeniably has a mob problem, and lately there’s a growing complaint about the way some of the more cult-ish fan communities wield their collective power to terrorize creators–or critics⁸–and influence creative decisions.⁹
These dynamics are part of the reason some digital communities are shifting away from social media platforms and towards more closed, intimate, and low-profile channels. A texting service called Community has gotten traction as a way for celebrities or brands to communicate with followers directly.¹⁰ Essentially, it’s Instagram or Twitter, but private–interactions are 1:1. Slack and Discord have provided a new kind of communication and organization platform for communities, beyond their foundational raisons d'être of work and video games.¹¹ And we’ve hit peak newsletter,¹² a throwback medium (email subscriptions!) that evokes a nostalgia for pre-social media days of the internet.
Studies have shown that heavy social media use–specifically of Facebook, Instagram, and Snapchat–correlates with feelings of social isolation rather than connection.¹³ It’s been said before, but social media is oriented towards breadth of connections, because that’s what’s been monetizable, but what people need right now is depth. And communities, oriented around shared interests, identity, or purpose, can genuinely give people that sense of belonging. A practical example of this within healthcare is how participants describe patient communities as support spaces that make them feel less alone in bearing the burden of health conditions.¹⁴
The turn away from the visible and public toxicity of social media delivers a sort of Dark Forest Theory applied the internet:¹⁵ What we can see of digital communities is only a shallow part of what is there. This makes the internet a more complicated and opaque landscape for security researchers and journalists to navigate, not to mention advertisers and marketers, who have only in the last few years become comfortable in the new media terrains of Instagram, Facebook, Reddit, and Twitter. In contrast, businesses had decades to hone brand strategy for magazines and television, which changed relatively slowly throughout the 20th century. This new era of digital community is a humbling reminder that the internet is still young, and we’re still just beginning to understand how it will evolve and the ways it will shape society.
This new era of digital community is a humbling reminder that the internet is still young, and we’re still just beginning to understand how it will evolve and the ways it will shape society.
“Bolt-On” Social Experiences for Digital Platforms
Jonathan Lupo
Head of Digital Experience Design, North America
San Francisco, CA, USA
Our need to socialize has been repressed for approximately seven months now, and we’re absolutely starving for meaningful social experiences. Just adding a chat or commenting feature into an eCommerce app won’t give us the virtual hugs we desperately crave.
Here’s an example from the world of entertainment: If we weren’t binge watching our favorite Netflix shows before the pandemic, we surely are now! Streaming services such as Netflix, Disney+, Hulu, Amazon Prime Video, HBO Max, and YouTube TV bring us some comfort, as we remain planted on our living room couches. However, these services haven’t been able to replicate that theater-going experience. And while drive-in movies have been making a come-back in small communities, there’s certainly an opportunity for digital streaming giants to make their content more social.
The “Bolt-On”
Efforts, to date, include the ability to schedule Netflix “watch parties,” which synchronize video playback with a group of watchers who can chat with each other during a movie or TV show. The ability to chat is a rudimentary social capability, however, and without seeing your friends, the experience feels somewhat disembodied.
Necessity being the mother of invention, digital media consumers have found a way to “hack” popular teleconferencing software, like Zoom, to create DIY watch parties with the ability to actually glimpse their friends’ faces. Streaming content providers will likely follow suit, bringing more embodied social entertainment to screens in 2021.
The Future
Deloitte claims that “there are more millennials, now, who have a gaming subscription than those with a traditional Pay TV subscription—and close to one-half of millennials and Gen Z pay for both a gaming and video streaming service.” Since gaming is inherently social, and given the crossover consumer base, it makes sense for movie studios and gaming platforms to join forces and create mixed-media experiences that enable consumers a greater degree of social interaction, engagement with franchises, and escape from reality. With VR now within the consumer’s grasp, a properly immersive, mixed-media experience could both entertain us and help satisfy that urge to be social, in a real physical sense.
The full version of this article, with further case examples from travel/hospitality and the music industry, is published on the EPAM blog. Read it here.
Patient Communities and the Shift in Power Towards the Patient in Healthcare
Naomi Korn Gold
Director, Innovation Consulting & Vertical Lead, Life Sciences
Boston, MA, USA
For a few years now I have eavesdropped, respectfully and with permission, in active patient Facebook groups related to our healthcare research and innovation work. What I have learned from these groups is that despite providers’ reasonable concerns, most of the reasons patients connect online are not about replacing providers and their expertise but about filling gaps between the healthcare system and the patient experience. That is to say, patient communities are impacting patient (and caregiver) health beyond posting acute health information for diagnosis and triage.
One example is sharing non-medical, life management information related to a particular health condition. For example, a parent might ask a group how to handle a disease that requires frequent absences from school or that makes it hard to sit still in class, and get advice on what accommodations to ask for and what forms to fill out with the school district. Often this sharing is about validating experiences in a way doctors can’t or won’t–the difficulty of finding bathrooms in public, or FOMO on a “normal” social life. When these experiences blur the line between medical and non-medical, for example sleep quality and daily energy management, they start to look like patient-important outcomes. This can be powerful–for one disease we researched, patients discussing public bathrooms in an online community discovered a pattern of gastrointestinal symptoms, previously medically unrecognized, which is now informing therapeutic research.
The internet also enables greater patient advocacy by helping communities organize. Facebook groups will mobilize their members to push for healthcare policy through letter-writing or calling campaigns to congressional representatives, or as in the case of recovered coronavirus patients, to donate plasma. Participating in a community in this way gives people purpose and a means to have impact. It also gives patients and their caregivers the confidence to self-advocate and to try–on their physician’s recommendation–a new treatment. In many groups, but especially those for hereditary and rare diseases, there’s a strong sense of being part of a ‘big-C’ Community; advocacy, information sharing, and validation are all manifestations of the desire to help and support each other.
A 2018 survey of young people found that 39% had searched online for others who shared their health condition, via forums, closed social media groups, hashtags, or by following other users with the shared condition.¹⁶ The growth of online patient communities has coincided with the rise of patient-centricity, which is happening globally; the wave is led by the US for cultural reasons. In the US, people seem to be more comfortable challenging doctors, asking for specific treatments, or switching providers, and in turn healthcare is more likely to incorporate lifestyle into treatment decisions. The ways that online communities empower patients to take a more active role in their own healthcare will ultimately continue to push the industry in this direction.
1.8
1.8 billion people use Facebook groups every month. 70 million people are involved in actively managing those groups.
