Autistica/Turing citizen science project

[GeorgiaHCA]

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Autistica/Turing citizen science project

Project team: @GeorgiaHCA, @katoss

Mentor: @anelda

Welcome to OLS-2! This issue will be used to track your project and progress during the program. Please use this checklist over the next few weeks as you start Open Life Science program 🎉.

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Week 1 (31 August - 4 September 2020): Meet your mentor!

• Create an account on GitHub
• Check if you have access to the HackMD notes set up for your meetings with your mentor
• Prepare to meet your mentor(s) by completing a short homework provided in the HackMD notes
• Complete your own copy of the open leadership self-assessment and share it to your mentor
  If you're a group, each teammate should complete this assessment individually. This is here to help you set your own personal goals during the program. No need to share your results, but be ready to share your thoughts with your mentor.
• Make sure you know when and how you'll be meeting with your mentor.

Before Week 2 (7 - 11 September 2020): Cohort Call (Welcome to Open Life Science!)

• Create an issue on the OLS-2 GitHub repository for your OLS work and share the link to your mentor.

• Draft a brief vision statement using your goals

  This lesson from the Open Leadership Training Series (OLTS) might be helpful

• Leave a comment on this issue with your draft vision statement & be ready to share this on the call

• Check the Syllabus for notes and connection info for all the cohort calls.

Before Week 3 (14 - 18 September 2020): Meet your mentor!

• Look up two other projects and comment on their issues with feedback on their vision statement
• Complete this compare and contrast assignment about current and desired community interactions and value exchanges
• Complete your Open Canvas (instructions, canvas)
• Share a link to your Open Canvas in your GitHub issue
• Start your Roadmap
• Comment on your issue with your draft Roadmap
• Suggest a cohort name at the bottom of the shared notes and vote on your favorite with a +1

Before Week 4 (21 - 25 September 2020): Cohort Call (Tooling and roadmapping for Open projects)

• Look up two other projects and comment on their issues with feedback on their open canvas.

Week 5 and later

• Create a GitHub repository for your project
• Add the link to your repository in your issue
• Use your canvas to start writing a README.md file, or landing page, for your project
• Link to your README in a comment on this issue
• Add an open license to your repository as a file called LICENSE.md
• Add a Code of Conduct to your repository as a file called CODE_OF_CONDUCT.md
• Invite new contributors to into your work!

This issue is here to help you keep track of work as you start Open Life Science program. Please refer to the OLS-2 Syllabus for more detailed weekly notes and assignments past week 4.

[GeorgiaHCA]

Background

During the OLS programme I will be working on an existing project I am working on to collaboratively build a citizen science platform with members of the autistic community. This link will take you to the repository:

https://github.com/alan-turing-institute/AutisticaCitizenScience

Vision Statement

We're working with a communinty of autistic people and their supporters to co-design a citizen science platform so that we can gather data to help make built environments (such as public transport, workplaces and hospitals) more enabling for autistic people.

I will facilitate the growth of a community of collaborators working on the citizen science project, and find ways to instill that growth with internal momentum. This will be done in keeping with the values of diversity, inclusion, equity and openness which are core to the project. I will also contribute a chapter or section to The Turing Way on participtory science so that the learning from the research process can be shared.

I've created an issue to capture some ideas for the chapter within the Turing Way's repository:

the-turing-way/the-turing-way#1315

Open Canvas

I have created an Open Canvas for the project.

Here is my Compare and Contrast sheet for communinty interactions.

[GeorgiaHCA]

Here's a draft vision statement. Would love your thoughts @anelda and @katoss

[LauraCarter]

This looks great @GeorgiaHCA! It's fab that you already have a community that you're working with, and that you are centreing this work around the people who are most affected, and I'm looking forward to developing all the links between our TTW chapter and yours!

[evaherbst]

This looks like a really great project! I especially like that it focuses on participatory science and am looking forward to seeing how it develops :)

[GeorgiaHCA]

Here is my attempt at a rewrite of the vision statement using only the top ten hundred words in English:

"We're working with people who sense the world in different ways to make a place where they can share their stories. This will help us learn and build a better world for everyone."

https://splasho.com/upgoer5/

[malvikasharan]

@all-contributors please add @GeorgiaHCA for content and idea.

[allcontributors]

@malvikasharan

I've put up a pull request to add @GeorgiaHCA! 🎉

[malvikasharan]

@all-contributors please add @evaherbst for review

[allcontributors]

@malvikasharan

I've put up a pull request to add @evaherbst! 🎉

[malvikasharan]

@all-contributors please add @LauraCarter for review

[allcontributors]

@malvikasharan

I've put up a pull request to add @LauraCarter! 🎉

[GeorgiaHCA]

The README for the main GitHub repository can be found here: https://github.com/alan-turing-institute/AutisticaCitizenScience#autisticaturing-citizen-science

[GeorgiaHCA]

Applying FAIR principles to my project:

• All the focus group data has been published openly on GitHub: https://github.com/alan-turing-institute/AutisticaCitizenScience/tree/master/community-recommendations/focus-groups
• The data has been moderated so that all personally identifying information has been removed, and participants have had a chance to edit and amend before publication
• User testing and notes from meetings are also published on the repository under "community-recommendations"
• Issues link clearly to recommendations from the community: Text-to-speech alan-turing-institute/AutSPACEs#308

[GeorgiaHCA]

Going forwards, the platform will be collecting free text data from autistic people.
To make the data collection FAIR, I would like to:

• make the dataset in a machine-readable as well as human readable format. Keep private unless reaserchers apply for use and have the go-ahead from the community
• openly publish data for which explicit consent is given by the individual participant. Co-create a code of conduct and moderation process for this by running a co-creation session: Moderation: Focus Groups and Code of Conduct  alan-turing-institute/AutisticaCitizenScience#385

[GeorgiaHCA]

https://docs.google.com/document/d/1b-8BixZSoepywSQuoL9ggXILJZvTguJtGOFWKY1f5GM/edit# - link to project Roadmap ; also being managed in GitHub projecets here: https://github.com/alan-turing-institute/AutisticaCitizenScience/projects/1