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alan-turing-institute / AutisticaCitizenScience

Project management and resource repository for the Autistica/Turing Citizen Science project
https://alan-turing-institute.github.io/AutisticaCitizenScience
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Write a paper on AutSPACEs for autism researchers #616

Closed GeorgiaHCA closed 1 year ago

GeorgiaHCA commented 2 years ago

Summary

An initial position paper which was drafted near the beginning of the project has been split into 2 - one to capture methods more generally, and one specifically targetted to autism researchers and presenting tools/sharing learning around AutSPACEs.

GeorgiaHCA commented 2 years ago

Sketch of potential Structure of Paper (2)

  1. Introduction • very brief sketch of autism research to contextualise participatory science (including references to different frameworks) • sketch of sensory processing research and need for real world accounts • some aspect of social model of disability in relation to autism to frame the ‘navigating environments’ aspect of AutSPACEs • sketch of need for control, privacy and information about data use and sharing in the context of autism research specifically • outline of paper – reiteration of these phases

  2. Methods • Origin of AutSPACEs: James Lind, Turing/Autistica partnership and Open Humans • Outline of methods, including different phases, current progress, and future phases • Description of data which will be used from the AutSPACEs research so far and how it will be cite

  3. Community-led elements of AutSPACEs: why this is important, challenges, and values: derived from consultation summaries. Illustration of some specific issues and challenges which emerged through the process of participatory science

  4. AutSPACEs, citizen science and open source: presentation of tools for scaling up participatory science

  5. Need for more welcoming and inclusive online space for autistic people (include findings about how autistic people tend to be discriminated against online, but also seek to share online – need for more responsible, inclusive space)

6.. AutSPACEs and data sharing

  1. Conclusion • Participatory science is valuable/worthwhile – existing frameworks and research support need and timeliness of participatory approach • AutSPACEs is a unique, participatory citizen science, open-source platform, which aims for more agency for autistic people in research – way of scaling up participatory science • Open science and careful data management can help redress some of the mistrust and mis-use of autistic people’s data
GeorgiaHCA commented 1 year ago

A draft paper has now been completed