Request for approval: AutSPACEs

Hey folks, I’m posting this request for approval on behalf of the AutSPACEs project, which would now be ready to launch! Please note: I’m doing so wearing my hat as a researcher on that project, and not as a contributor/board member of Open Humans. :slightly_smiling_face: Instead, the project is run by a team located in the Tools, Practices & Systems programme at The Alan Turing Institute in London, which includes me.

About the project

AutSPACEs is a citizen science project around sensory processing as experienced by autistic people. It has been co-designed/created with a community of autistic contributors and allows people to share qualitative data in text form, about where/how people experienced sensory processing challenges and the recommendations they would have to make a positive difference (either personal coping strategies or to designers of spaces). For each experience, participants can keep the data private or opt-in for different use of the experience, including the use by researchers and/or making it publicly accessible.

Public sensory processing experiences are subject to moderation, and the content moderation guidelines have been co-created between autistic contributors and the research team. The design of the content moderation has already been published in Data & Policy.

After developing the platform and two rounds of user testing we are now ready to launch the platform and start collecting data. The project has successfully undergone the ethics approval process within The Alan Turing Institute (see full ethics submission form here) and was approved on April 10, 2024 (approval #24041012).

The source code for the platform that is used to interface is open source and accessible on GitHub. Additionally, we also provide a demo/development deployment for evaluation on Fly.io (please be aware that this one is running in debug-mode for development/testing purposes and is not the actual OH project we are seeking approval for!).

Project details:

Data requested: This project does not request access to existing/3rd party data sources, neither does it request user names.
Data added: The project will add text-based “stories” or experiences surrounding sensory processing in autistic participants.
Data privacy/security: From a privacy perspective, we do not aim to collect personal identifable information (PII). We have minimised the amount of demographic data and made that collection optional. Additionally, any experience people want to share publicly will be moderated to ensure no PII will be included. From a security perspective, we follow best practices in web-development, including standard encryption for data transfer and storage. As the whole project is open source, the source code is available for inspection. The final deployment of our project will be on MS Azure as a “web app” that runs in a containerised environment and within a VPN that only exposes the web app and no other ports etc.
Explain what happens with the data after a user leaves your activity: When people leave the project, we will delete all of their data on our servers. Additionally, they get the choice to delete their data on Open Humans as well.

Summary

Quick links

Project info

  • Title: AutSPACEs
  • Managed by: Bastian Greshake Tzovaras & Kirstie Whitaker, The Alan Turing Institute
  • Description: AutSPACEs is a citizen science project that has been co-created by and for autistic people to better understand sensory processing challenges. In particular, we aim to collect qualitative data on the sensory experiences autistic people face in day-to-day life and how to better navigate those. You can learn more about the project on our participant information page: AutSPACEs - Participant Information Sheet
  • Project website: GitHub - alan-turing-institute/AutSPACEs: Code respository for AutSPACEs: the Autistica/Turing citizen science platform
  • Data received: None
  • Data added: Sensory processing experiences & recommendations
  • Ethics review: Approved by the Turing Ethics process on April 10, 2024. See application form (approval text can currently not be shared publicly unfortunately).

Looks good to me! Glad to see this project is finally about to go live :rocket:

1 Like

Thanks @kati!

I saw we also hat 3 more folks on the Open Humans Slack who gave a :raised_hands: emoji (and one :pray: emoji) as their feedback, which at least indicates some level of having seen this :smiley: