In April I received the happy news that I was selected as an OpenCare Community Fellow by SCimPULSE Foundation and Edgeryders.
Ironically, in the month that marked the start of the fellowship, I was struck by several illnesses. As a Belgian citizen, I can get the best care for next to zero financial cost for myself. Though, what is mainly just a nuisance for me, can be dramatic for those in more precarious situations. Those here outside the healthcare system and those in areas with weaker or no social security.
The track I curate at the festival investigates the role science and research can play in a more resilient care system. Specifically we will zoom in on open science and citizen science in all their forms, and learn from real-life projects.
Exploring the ecosystem
The past weeks have been an exploration of what is out there, which you don't get to do nearly enough when buried deep in your own project. It was a period of trying to spot connections, common issues and creative solutions. Talking to people and connecting them to each other. Outreach has been difficult at times. Being too busy truly is a sign of our times, all the more so for people exploring new ways. Things take time at the edge.
The people that I did have the pleasure to speak with, however, proved that there is a plethora of possible solutions, and challenges. Among them are an interdisciplinary researcher stewarding data on walking mechanics for indigenous communities and an activist developing a way for individuals to manufacture their own medications. They have issues with legal battles and attracting talent, respectively.
In mid May I attended the BioFabbing Convergence. Many European biohackers, citizen scientists and experts gathered in CERN, Geneva at Ideasquare. The conversations I had and the presentations I attended offered insight into running community science spaces, education and science activism on the edges.
Among participants, plans were made to take concrete action towards improving citizen science practices, one of which is the DIY Science Network.
Challenges I’ve faced have been time related. Between being ill, crisis management for own projects and working with people scarce on time, getting concrete things done is difficult. It goes to show that being active in the fields that we are, does also mean being more vulnerable to factors outside of your control.
Going from interesting conversations in real life to stories on the platform, has also proven difficult. The Edgeryders platform is, quote, “hard to navigate or have an overview”. We have noticed the same with people participating in the Open Insulin research. Part of the solution is getting a hang of it, another part are improvements to how people navigate the site, which the Edgeryders team is constantly doing.
There have been inspiring stories on the platform already for a while, some of which I have reached out to and will assist in drafting a session proposal over the next weeks. The community calls are a nice way to connect with everyone and discuss new ideas.
After the community call of earlier today, the first sessions should be ready for scheduling over the next week. Additionally, I’ll be getting more external people into the existing discussions, and inviting more people to share stories and session proposals.
Any help with the latter is welcome: if you know of any inspiring people active in the field, let’s get in touch!
This blogpost has been realised as part of the OpenCare Community Fellowship Program with the support of SCImPULSE Foundation.