Comments (2)
Sketch of potential Structure of Paper (2)
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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 -
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 -
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
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AutSPACEs, citizen science and open source: presentation of tools for scaling up participatory science
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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
- 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
from autisticacitizenscience.
A draft paper has now been completed
from autisticacitizenscience.
Related Issues (20)
- Create README for moderation summaries
- Submit proposal for Autistica festival HOT 6
- Create session for MozFest HOT 9
- Send out a February newsletter HOT 1
- Sync design-content folder with AutSPACEs repo HOT 2
- 🐛 BUG: Spelling and Grammar fixes needed in Personas documents HOT 2
- Motivations for moderators HOT 1
- Teach-in - AutSPACEs: Building a participatory Citizen Science Research Platform HOT 4
- Add Code of conduct and guidelines for moderators to the repository as a markdown document. HOT 1
- January - March 2022 AutSPACEs Updates for TPS HOT 2
- Report for Autistica HOT 1
- Rewrite abstract for Autistica
- Create a slide deck and record a presentation for the Autistica Fest 2022 HOT 5
- Spring Clean both repositories
- Link appears to be broken HOT 6
- Update consent form HOT 1
- Submit TPS updates for April-June 2022
- AIM RSF - AutSPACEs Presentation HOT 5
- Set up co-working slot for moderation paper HOT 2
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from autisticacitizenscience.