Complete ethics form

[KirstieJane]

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.

---

• Q1. Title of the study
  • Building a participatory citizen science platform to improve the lives of autistic people
• Q2. Primary applicant
  • Kirstie Whitaker @KirstieJane
• Q3. Co-applicants
  • James C
  • Bethan D
  • Georgia Aitkenhead @GeorgiaHCA
• Q4. Corresponding applicant
  • Kirstie Whitaker @KirstieJane
• Q5. Where will research take place
  • Alan Turing Institute
  • Autistica
  • Online
• 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
• 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
• Q8. Funders
  • Autistica
  • Alan Turing Institute (overheads and research fellowship to KW)
• 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
• Q9a. Pharmaceutical compounds
  • No
• 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)
• Q11. Who are the participants?
  • Discover network and insight group
  • Online: Everyone(!!)
    • Specifically target citizen science developers and leaders, and autistic people.
• Q12. Recruitment proceedures
  • In person through Discover Network & Insight Group
  • Online via social media and project pages on Turing and Autistica websites
• Q13. Informed consent
  • In person consent form
  • Online survey - two questions - one at start, one confirmation at end
• Q14. Written consent
  • In person - yes
  • Online - no - electronic instead
• Q15. What are participants told?
  • Everything!
• 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
• 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
• Q18. What are participants told at the end of the study?
  • Everything!
• Q19. Previous experience from research team members?
  • Kirstie
  • Bethan
  • Autistica staff more generally
• Q20. Insurance
  • KW
• Q21. Data security
  • Need to incorporate GA's diagram

😌 nearly there 🤗

[KirstieJane]

Submitted and approved! 🚀