Our paper describing Quantified Flu is now out in a peer-reviewed version in the Journal of Medical Internet Research. Our main finding is that a community-driven open source approach can not only rapidly create a working tool to support individuals in learning from their own data, but also leads to a tool that’s particularly well-adapted to community needs – leading to a high level of continued usage that is untypical for mobile health applications.Read more
We are happy to share a new publication - Contours of citizen science: a vignette study – in which we have been involved and that just came out today in the journal Royal Society Open Science. This study explores which activities are and are not considered to be citizen science and makes use of a vignette-based survey approach in which over 300 participants were asked to rate whether they would use the term citizen science for a given, fictional project description. Using this empirical data we find that there is a plurality of understanding of what citizen science is that depends on a variety of factors. This work was part of the EU Citizen Science project and is the result of a wide and international collaboration of over 25 authors from across Europe.Read more
Our latest publication - Empowering grassroots innovation to accelerate biomedical research – is out now as a perspective article in PLOS Biology. The result of a collaboration with fellow researchers at CRI, Hackuarium in Lausanne and the Centre for Health Ethics Law and Development in Toronto; it is one of the winning essays of the Reimagine Biomedical Research for a Healthier Future Essay Challenge that was launched by the Health Research Alliance & PLOS.
We argue that one of problems with how biomedical research is being conducted today is its hierarchical and closed structure, leading to a slow pace of innovation and research that often does not serve the needs of society. In contrast, bottom-up and open innovation communities (such as DIYBio, Fablabs and patient-led research teams) have the potential to overcome many of these problems.
Unfortunately, these initiatives remain the exception from the rule due to a lack of systemic support for them. To address these short-comings we propose three actionable reforms that could support grassroots innovation in biomedicine, which revolve about improving access to:
- hardware, lab equipment, and consumables
- funding routes for grassroots research movements
- ethical oversight
New preprint out: 'Peer Production Practices: Design Strategies in Online Citizen Science Platforms'!
We have just released a new preprint on SocArXiv: Kloppenborg, K., Ball, M. P., & Greshake Tzovaras, B. (2021, May 23). Peer Production Practices: Design Strategies in Online Citizen Science Platforms. https://doi.org/10.31235/osf.io/rw58yRead more
Gary Wolf, journalist, researcher and contributing editor at Wired magazine since its beginnings, is the co-founder of Quantified Self, an international community of users and makers of self-tracking tools who share an interest in self-experimentation and “self-knowledge through numbers”. Gary is also one of the board directors of the Open Humans Foundation, and active contributor of the Open Humans self-research community. We interviewed Gary during a data collection process for a study on motivations, learnings and peer support in self-research communities (more info here), and since Gary gave permission to use his non-anonymized data (“I’m a journalist!”) we reproduce our conversation here, with minor edits.Read more
Our amazing Master student Clara Lehenaff has designed a community-based participatory research study to improve gynecological care for trans women. With Transbiome she is exploring the microbial diversity of the neovaginal microbiome to perform the basic research that is necessary to understand how to treat neovaginal infections.
The crowdfunding campaign for her study is going extremely well: With more than 2 weeks to go we are already at over 80% of the optimal funding goal. Please consider contributing to the campaign to help us make the study happen!
The conference season is starting up again. And as all events are remote these days due the pandemic, participating is as easy as joining a call. Some of our team members are giving talks at different conferences within the next few weeks:
Bastian is presenting what we learned with Quantified Flu at csv,conf,v6 on May 4 and will talk about how Open Humans implements infrastructure for citizen science at Data Justice on May 20.
Enric will present his work on the motivations of personal science practitioners at the Science & Technology Studies Italia conference at the end June.
Over the last days we have released two new preprints on MedRxiv: The first one is about the creation of the Quantified Flu project, which was designed and implemented collaboratively with members of the Open Humans and Quantified Self communities and highlights both the co-design process as well as the benefits of this approach.Read more
This includes conferences or workshops where members our team participate in, as well as publicly accessible events we organize, such as our fortnightly journal clubs.