the NICUVERSE - the solution to collapsed neonatal social media feeds?

I spent a few wonderful days at jENS 2025. While I had great days at this large neonatology conference, I also checked in into the various social media channels, to find out about missed out things. And realised… the neonatal social media is pretty dead ☹️

In the beginning, we had a pretty basic Internet. It offered the opportunity to search for information unilaterally and connecting people over electronic mail.

Later came the embryo of the social web, taking the communication beyond emails. The first multi-lateral gatherings happened on so-called Bulletin Boards, often geeky/niched online spaces where like-minded people found freedom and space to “share and care”, as the saying went back then. The 99nicu Discussion Forum was started in 2006 with such an intention, to build a dedicated online community for NICU staff.

The social web, as we know it today, was/is built on scale. I believe the initiatives that developed into the large global platforms had sound intentions, but the magnitude of fast growth required business models and venture capital to sustain. As we all know, there is no such thing as a free lunch.

Through massive user bases and algorithms, the typical social media feed selectively promotes content aligning with your own posts. In the early days of Twitter, this worked wonderfully well. I was an early Twitter user and truly enjoyed an engaging and active feed. Back then, Twitter was my primary space for finding and discussing new research publications. However, when the open athmosphere got lost, I decided to log out for good.

Large social media platforms will, sooner or later, need to capitalise on you, using your data/content for promotion of advertising content. Furthermore, the social web offers anonymity and automation, enabling less nice accounts to ruin your good feeling about your freedom of speech. “Enshittification”…

Coming back to jENS and social media...

There are a larger set of social webs now. In addition to “the old” X, Facebook, and LinkedIn, we now have Threads, BlueSky, and Instagram. I checked in myself on all mentioned platforms, browsing the conference hash tags #jENScongress and #jENS2025. The results were indeed disappointing. With the exception of companies advertising their presence, very few posts popped up with professional reflections, questions, and comments about sessions and workshops. Back in the days, it was possible to follow news and views shared as conference "live-feeds" on Twitter, as if almost being there in person. The social media coverage of jENS was nothing but a disappointment.

Why this?

This variety of social webs has led to fragmentation. Today, there is no natural single space for online instant sharing/discussion. People are spread out, there is no critical mass of niched content / people.

What now?

As a believer of independent initiatives driven by Greater Good Goals beyond business models, I think there is indeed room for our older and slower 99nicu Discussion Forums. But I would love to have an instant feed like Twitter with focused neonatology content, like my old Twitter feed. A large number of NICU staff has joined BlueSky, but despite my attempt to curate a focused feed, it gets cluttered by pets, politics, and all problems in today’s complicated world. I have nothing against pets, politics, or world problems (the other way around!), but I prefer to get such content through other channels (like regular news media).

Some time ago, 99nicu opened “the NICUVERSE”, i.e an own Mastodon server. Mastodon is a self-hosted social media platform that gives full control to you as a user (and to us hosting it). There is a slightly higher threshold to get into how it all works. And, the technical platform is also a work in progress (being open source). But we are all smart people and learn by doing! There are several principal advantages with Mastodon: there are no adverts, no one sells your data, you control your integrity and privacy. I do believe Mastodon to be the platform for a community feed with uncluttered neonatal care content.

If you are curious to try this out, register for the NICUVERSE here! I will do my best to contribute with content 😀