We need to apply for ethics approval for the Autistica/Turing citizen science project.
We'll do this in two stages: the first to get approval to ask people for their opinions and to help us design the project. The second to actually collect data and build the platform.
This issue captures our checklist of the tasks that have to be completed for the ethics proposal to be submitted.
[x] Q1. Title of the study
Building a participatory citizen science platform to improve the lives of autistic people
[x] Q2. Primary applicant
Kirstie Whitaker @KirstieJane
[x] Q3. Co-applicants
James C
Bethan D
Georgia Aitkenhead @GeorgiaHCA
[x] Q4. Corresponding applicant
Kirstie Whitaker @KirstieJane
[x] Q5. Where will research take place
Alan Turing Institute
Autistica
Online
[x] Q6. Start & end dates
Start: early 2019
End: 6 months after ethics approval, summer 2019
Note that this is phase one of the ethics approval, another will be submitted in autumn 2019
[x] Q7. Purpose and rational of research
Sensory processing
Scope and design with autistic community
Deliverable: open access paper and openly licenced resources
Note that this is phase 1, not phase 2
[x] Q8. Funders
Autistica
Alan Turing Institute (overheads and research fellowship to KW)
[x] Q9. Methods and procedures
I think this looks pretty good....need to double check at the end
In person:
discussion sessions - up to 16 people
feedback interviews - 1:1
additional comments by email or via post it note in the session if participants would prefer
Online
"always open" survey
GitHub issues and pull requests
[x] Q9a. Pharmaceutical compounds
No
[x] Q10. Ethical issues and measures taken
This is very close, needs links to some docs that @GeorgiaHCA is currently building to diagram the reporting pathway, and a code of conduct.
"Nothing about us without us"
Values
Iteratively incorporate feedback
Accessible in person interactions
Online and in person code of conduct
Reporting pathway (challenges with other contributors, challenges with research team, in person safeguarding)
[x] Q11. Who are the participants?
Discover network and insight group
Online: Everyone(!!)
Specifically target citizen science developers and leaders, and autistic people.
[x] Q12. Recruitment proceedures
In person through Discover Network & Insight Group
Online via social media and project pages on Turing and Autistica websites
[x] Q13. Informed consent
In person consent form
Online survey - two questions - one at start, one confirmation at end
[x] Q14. Written consent
In person - yes
Online - no - electronic instead
[x] Q15. What are participants told?
Everything!
[x] Q16. Personally identifiable data beyond research team
No for recordings etc
No for data from online survey (redacted names and locations before sharing)
Yes for public conversations on GitHub
[x] Q17. Payments
@GeorgiaHCA to check with Autistica's pay scales (3 hour session, 1 hour session, 30 minute session).
Not online, but prominantly acknowledge contributions
[x] Q18. What are participants told at the end of the study?
Everything!
[x] Q19. Previous experience from research team members?
KirstieJane
commented
5 years ago
We need to apply for ethics approval for the Autistica/Turing citizen science project.
We'll do this in two stages: the first to get approval to ask people for their opinions and to help us design the project. The second to actually collect data and build the platform.
The ethics form has be downloaded from https://www.bio.cam.ac.uk/psyres by clicking "application form" on the right hand menu.
This issue captures our checklist of the tasks that have to be completed for the ethics proposal to be submitted.
😌 nearly there 🤗