Research to empower: co-creating a citizen science project
Creators: name: Aitkenhead, Georgia
Publisher: name: Zenodo
Year: 2020
Subjects: autism, citizen science, participatory science, turing, cogx, open source, co-create, community, platform

description: This is a talk delivered for the Tools Practices and Systems Research Stage of CogX 2020 on 09/06/2020 Open source development, citizen-science, and participatory science are three fields of rapidly expanding growth, opportunity, and debate. This talk will present recent findings from a research project occupying a unique point at their intersection. This project is currently developing a citizen-science platform which will be used to collect data on sensory processing and autism. Experiencing sensory processing differences compared to the wider population is a diagnostic criterium of autism – and its prevalence is supported by numerous lab-based studies. Yet there is a research gap in understanding how sensory processing affects autistic people in their daily lives as they navigate the world around them. This is a vital area of research, with the potential to help make spaces and environments such as workplaces, schools, hospitals and transport more accessible for autistic people in the short and long term. The data gathered can be used to create guidelines and strategies, as well as suggest areas for future research, in the service of longer, healthier, and happier lives for autistic people and their families. Furthermore, the research topic addresses two of the top priorities for autism research according to a 2016 James Lind priority-setting alliance. One of the most striking aspects of the project is its unique position spanning many different fields, sectors, and workflows. Organisational stakeholders include The Alan Turing Institute, the UK’s national institute for artificial intelligence and data science, and Autistica, a UK-based autism research charity, and The University of Cambridge. The research team is based at The Turing but are working across multiple sectors, with a development team provided pro bono by Autistica’s corporate partner, Fujitsu, a back-end infrastructure supported by The Open Humans Foundation, and volunteers from a wide range of backgrounds and organisations, including the UK government and the BBC. Most importantly, both the research process and the platform itself are being collaboratively designed and co-directed by members of the autistic community. This talk will present a framework designed to underpin a community-led partnership combining academic, charitable, and corporate workflows, allowing them to be directed towards shared goals, governed by a shared understanding. It will propose how open source, citizen-science, and participatory science can be not only compatible with one another, but mutually supportive, both ethically and practically. It will showcase a new qualitative dataset derived from ongoing dialogue between researchers, developers, members of the autistic community, and those who are in multiple groups. Further, it will demonstrate concrete steps by which community discussion can be transformed into actionable user stories, addressed openly and transparently on GitHub, and used to develop the platform itself. Throughout, the talk will explore challenges and possibilities of distributed work, leadership and collective decision-making. The result of the project will be a citizen-science platform which can be easily adapted to investigate other research questions, and a framework which can support other studies, on a potentially international scale. This talk will showcase insights, new data, and learning from the project as it unfolds.