https://tinyletter.com/AutisticaTuringCitizenScience/

Lets build a wireframe to guide development of the platform.

Tagging @akeshavan to find out the resource she used to build a wireframe.

I think it also makes sense to collect together a paragraph or two about why wireframes are so important.

On Monday 18 November some of the Fujitsu team are visiting @KirstieJane & @GeorgiaHCA at the Turing Institute for a co-working day.

This issue is to capture the agenda and goals of the day, all comments welcome!

Agenda

Proposed - comment below with suggestions to change the plan

Ice breaker

In this welcome session we'll split up into pairs, ideally with people that we don't know well, and find answers to the following questions:

• What is your current job and how did you get there?
• What about the citizen science project excites or motivates you?
• What is a fun fact about you that I'm unlikely to already know?

Then each person will feedback to the room what they have learned about their partner (so not answer the questions about themselves, but answer them on behalf of their team mate).

Discussion: Designing failure

An open discussion about what failure would look like for the project. What actions (or in actions) would likely lead to problems in the future?

Skill share: GitHub issues & milestones led by Kirstie

A demonstration and explanation of the contributing guidelines for the project, including the use of issues and milestones for project management.

Skill share: Requirement gathering & prioritisation - Fujitsu

A discussion of how Fujitsu run their requirement gathering process, demonstration of the current user stories and how priorities can be adjusted as we go forwards.

Discussion: Designing success

An open discussion about what success for the project looks like and how we'll get there.

Discussion: Roadmap and next steps

Closing out the sprint with a reflection on the day and agreeing next steps.

Logistics

• David Blackwell meeting room
• Arrive through main British Library entrance (after doors open at 9:30am)
• Lunch ordered by facilities team

• Link Fujitsu team to OH Slack (Georgia A)
• Map realms of knowledge

Add James Scott as a collaborator to the repo's front page

We sent out our first newsletter on Aug 5 2019.

Lets aim to send out the next one in the first week of September 😄

This issue is to collect together content that we want to include in that newsletter.

@GeorgiaHCA, can you draft one and open a PR when you're ready? We should also collect together the newsletters in this github repository. Lets make a folder called newsletters and put them in there.

Originally posted by @SuziQpid in #33 (comment)

Finally found a user friendly interface. As most l.T. challenged member of Citizen Science but keen to stay in touch, may l remind everyone that not every uses main frame computers or laptops. I’m typing on an iPad mini, and to be irritatingly non synced except via Google, an Android phone. Autistic participants in the move and with limited digital resources need to be able to create a github account and get stuck straight in. I did that, thought ld be super keen and go to the gitter chat room only to discover after adding my ‘ repository’ ( horrible word that feels like some kind of sanitised ‘dump ‘) that l couldn’t type in unless l could raise a keyboard to do control/ slash stuff. Guess what couldn’t find a way of doing that. Returned to email and decided to follow straight forward github link. I think for the less tech savvy you should clarify which platforms will work best with which types of operating systems iOS, Android etc. There are too many links to too many interfaces. If you say who will be monitoring or doing the admin on the github, whether responses will be instant, or say take 24/ 48 hrs we will know what to expect. This Autistic Geordie needs to know lm not gonna get ‘ hetup ‘ if there’s digital silence. What lm resdding above Heroku etc is a foreign language that l can’t ever hope to speak. I wonder if others in lnsight focus group Kirstie are also a few light years behind in this tech speak. I can follow a little of your first suggestions about demos and would be more than happy to be a digital guinea pig. I helped test the user friendliness of the Peoplefirst website before it was launched.

Thank you so much @SuziQpid for this contribution! I've pulled it out and made it its own issue because I think there are a lot of actions to unpack in your feedback.

I've made a starter list of actions here (but please let me know what you think!):

• Include links to Gitter iOS and Android apps: https://gitter.im/apps
  • Question: do they work though? Are they useful?
• Develop specific pathways for contributions for computer, iPad/tablet or smartphone
  • Note that the mobile interface for GitHub is not very easy to use, and only recommended for reading.
  • Maybe accompany each of these with some videos to point out what's what on the page? In action at #25
• Add expected reply times in "Get involved" section (within 48 hours on Monday to Friday)
• Note that contributing via google form doesn't require an account and is probably the quickest and easiest way to share comments.

(We'll aim to implement the changes above by 11 September, 2 weeks from now.)

There's one other action that I'm not sure how to implement. The issue you commented on #33 requires advanced technical web development expertise. I wonder what the best label for those types of issues would be, to make it clear that they are targeted at people with specific technical skills? I added the tech-skills-req label but I guess it wasn't obvious? Too many distracting pieces of information on the page, I guess.

Would web-development be better? I don't want to be patronising or exclusionary, but I also appreciate that trying to read task descriptions that are "a foreign language" is really annoying.

Thanks again @SuziQpid - and if anyone else is reading along, it would be great to get your comments and feedback too!

We have three focus group sessions coming up to discuss the project. What would be the best structure for the sessions/questions to ask?

Replace current docs with new versions with updated timelines and wording

@GeorgiaHCA is giving a talk at the

• Slide 1: all good
• Slide 2: play the video
• Slide 3: spend some time on this slide - have some of the stats available from the uk research review in a hidden slide in case you get questions about these points
• Slides 5, 6, 7: (I made these so obviously I like them 😆)
• Slide 8: this is great - the audience will know what github is but won't necessarily have used it - maybe add another slide with some images of conversations on issues and pull requests
  • Add in example of focus groups and getting feedback on them!
  • Maybe have a hidden slide on research that shows that participants don't read consent forms and don't know what is happening with their data 😬
• Slide 11: Don't forget to add collaborators
• Slide 12: looks good to me 😄

There's a risk that this group are going to ask where the hypothesis is: what model are we testing. Think about a response that is about the processes and practices of developing software engineering, demonstrating how we embed ethics into the tools and systems we build, and focusing on who gets to direct research questions and for what purpose.

Aim for 20 minutes of talking and 10 mins for questions.

Find way to transition smoothly between markdown and other formats (such as Word docs)

"As a contributor I want to be able to organise issues according to deadlines so I can know how long i have to contribute and what is urgent"

@GeorgiaHCA is going to be presenting the project at the British Library national inclusion week event on Thursday 26 September from 12noon to 3pm.

This issue is to track some of the tasks that we need to complete to prepare for that event.

• Little blurb about the booth - 3-5 sentences
• Make some postcards with key information about the project and how to get involved
• Ask an autistic collaborator to join in, even if just for part of the event?
  • This is a bit of a tough one because presumably its quite a big ask - it will likely be noisy and busy... But anyone reading this who would like to be involved would be extremely welcome, and maybe Bethan can recommend some members from the Insight group to come along? Or an (autistic?) Autistica staff member?
• Get some useful materials from Autistica to hand out
• Get some promotional materials from the Turing to hand out
• Make sure to have laptop to show how to navigate github, the google form and the heroku app. Note that both need internet access to work, so be prepared to discuss in the abstract if the wifi goes down.

Anything else I haven't thought of?

Docusign? Or print out and scan?

"As a researcher I want my collaborators comments to be in the format of user stories so that they can be easily actioned by the Fujitsu team"

When we submit the ethics form (#1) we also need to apply for a letter from the insurance section of the University of Cambridge. Information at http://www.admin.cam.ac.uk/offices/insurance.

"As a contributor I want to see an overview of the project so that I can make sure my work fits into the plan as a whole"

• Organise existing issues into milestones
• Write a roadmap in mardown which explains the project to new collaborators
• Link to milestones and issues from roadmap

The review that LC provided was really excellent and had some great suggestions for improving some of the processes for this project.

@GeorgiaHCA - please can you create a new branch in this repository and update the files in the project_management directory to reflect those changes (and any others that we've recieved).

Lets aim to submit a ethics ammendment on September 1 (or thereabouts). ✨

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 🤗

I'm on the programme committee so I'd prefer not to speak, but @GeorgiaHCA you could maybe give a talk about the project and its integration with Open Humans?

https://www.springernature.com/gp/campaign/scidata-lightning-talks

"As a collaborator I want to receive regular updates so that I can easily see how the project is progressing and how my contributions are being used"

"As a researcher I want to share information with collaborators on the project's progress so that I can build a community and get feedback on my work"

• Interview OS and get picture
• Write
• Review
• Send to Mailing List

I think the best one that's kicking around at the moment is the Carpentries one.

It's available under CC-BY so I'll open a PR to incorporate a version of their document.

Here's a slide i've presented at a focus group:

Adapt slide - along the bottom - logos (and minimise) - take question from James Lind Alliance - How could sensory processing in autism better be understood? - url to priority setting - collaborating with Autistica - and in 2017 ran priority setting exercise - read about here - and one of them was - our goal to use data science and citizen science to be able to answer this question at scale…

Visit to Turing health programme - one slide and talk for 3 minutes to present the citizen science project.

• Send round summaries to participants and publish on GitHub
• Turn summaries from focus groups into user stories
• Redact personally identifying information from Google Forms Surveys and turn into user stories
• Explore Open Humans backend and understand data flow and itegration
• Turn these into issues/requirements
• Onboard Ellen and Emilia
• Consult with Autistica on their information
• Gather requirements from Alan Turing from researcher perspective
• Go through GitHub issues

At the moment we only tell people that we will not be able to contact them at the END of the form. We should make it clearer on the first page that as we are not able to contact them because we are not collecting that information.

Deadline 22nd January

"As a research organisation I want to be able to track the projects I fund so that I can see how they are progressing"

"As a researcher I want to track my research and share it with funders to ensure expectations are aligned and to make sure our work is transparent."

Track impact assessment: https://www.researchfish.net/

In building a data management pathway we have realised that it is important to balance maintaining anonymity with giving credit to our contributors.

For example:

• If we want to use a quote from a focus group or user testing session, can we provide an option for the contributor to be identified if they would like? Our default will be to not identify the contributor.
• If we want to to use a quote from the online form, we do not currently have a process through which this could be done. 😬

What about if people want to be acknowledged as a member of the focus group? Or as someone who has contributed to the online form?

We could have a humans.md file in the github repository that acknowledges everyone who has contributed if they wish to be named. Here's an example from the turing way project humans.md.

As @GeorgiaHCA and I have chatted about this more, I think we're in some tricky territory linking the specific quotes to specific people. I think a better move would be to have all quotes be anonymous but make sure we acknowledge all contributors clearly.

Hey @SaimaButt

Thanks for doing the user stories on the OH demo repo (under issues):

https://github.com/alan-turing-institute/autistica-filemanagement-demo/issues

Do you think you could label them as user stories, so it's clear they are all part of the same group, and link to them from this repo?

😸

Create a plan for project continuation/maintenance when current funding is complete.

This is something to workshop with the community, so there's no rush in naming the project right now!

But here's an issue to capture any ideas and discussion as we go along, and to make sure we don't forget 😸

Quote from @fjThomasStanley in Gitter (emphasis from @KirstieJane):

The Fujitsu team are still very much in the project initiation phase and therefore we will still need to decide and agree on how we would like to receive user requirements, however I think we would like to use a standardised Agile User Story format. I have created a potential example format to be discussed with the team on the Fujtsu fork of the AutisticaCitizenScience repository as a template for a new issue. I will raise the point about user requirements format in our next meeting next week with the team.

So no action at this time.

In completing the ethics form #1, the last step is to collect together all the different appendices!

Here's the list:

• Appendix 1: PDF copy of the online form (A1_OnlineForm.pdf)
• Appendix 2: Values statement (A2_ValuesAndOutcomes.pdf)
• Appendix 3: Code of conduct (A3_CodeOfConduct.pdf)
• Appendix 4: Building a safe and valued community (A4_BuildingASafeCommunity.pdf)
• Appendix 5: Autistica Insight Group recruitment form (A5_AutismInsightGroupRecruitmentForm.pdf)
• Appendix 6: Consent form (A6_ConsentForm.pdf)
• Appendix 7: Data management (A7_DataManagement.pdf)

• Write draft of guidelines
• Get feedback on clarity and usability
• Redraft based on feedback
• Review redraft
• Circulate along with summaries to participants
• Add as documentation to the repo in the form of a pull request

While @gedankenstuecke was visiting the Turing in July, he and @GeorgiaHCA made a little demo of the platform that integrates nicely into Open Humans: https://github.com/gedankenstuecke/autistica-filemanagement-demo

We need to make this easy to interact with and give feedback on.

Some ideas:

• Serve the website using netlify so folks can interact with it (make sure that we the researchers have no access to the input data)
• Add link to that website from README, ghpages website from this repo
• Add link to google form to demo website to make it easy to see how to feedback thoughts and suggestions

It would be helpful to have step-by-step guidance - numbered or bullet pointed, and to split up the text might be useful for some people (into separate pages for separate methods).

Ideal to put this on the main Autistica/Turing page

Enough options as it is - just make it clear!

We need to consult with natural language processing experts to understand how to best build the platform from their perspective.

• Communicate worth of project internally (AT and Autistica to support)
• Apportion time
• Contingency planning

And link from README

• make git work

• https://accessibility.blog.gov.uk/2019/02/11/using-persona-profiles-to-test-accessibility/
• https://www.plymouth.ac.uk/about-us/teaching-and-learning/inclusivity/how-can-i-be-more-inclusive

• Transcripts and notes from focus groups held on Autistica servers
• Meeting w co-author set for 12 April
• Comms and stakeholder management - handed over to @KirstieJane & Rebecca (Autistica)

@KirstieJane to meet with James C to figure out next steps etc

• Have Skype meeting
• Do first pull request

Lets make some postcards ✨

@GeorgiaHCA - you have a design already - can you upload the pdf to this issue for review?

Might be good to check in with Rebecca on language etc 😃

• Internal Fuijtsu meeting to discuss timeframes/setup team
• Imogen to organise with Georgia Turing/Fujitsu meeting (KW on strike 25th Nov - 5th Dec)
  • Date agreed: 13 January from 10am to 3pm
  • Need location
• Meeting agenda agreed
• Order lunch from Bunego - lets go for all vegetarian this time and get some desserts 😋

OpenSourceAgile.docx

Hi everyone, here's a potential version of the workflow combining agile, open source, and participatory science. Still just a fairly simple version. Would love your input!

"As a contributor I want to gather feedback from members of the autistic community so that the platform ireflects them"

"As an autistic person or relative or carer of an autistic person I want to give my feedback so that the platform reflects me"

"As a researcher I want autistic people and their relatives and carers to give their feedback so they are incentivised to participate in the study and have a good experience of interacting, and so that I can collect the best data which can have the most beneficial impacts"

• Find/allocate UX designer from Fujitsu to project (Andrew H)
• Liaise with Autistica to recruit Insight Group participants as testers (Georgia A)
• Arrange/run sessions - build into sprints

We can make a website from this github repository! That will probably be easier for autistic people to access. GitHub is a weird space that can be really difficult to navigate if you aren't used to it and we want to make contributing to the project as accessible as possible (for all!)

Update: I've rendered the README: https://alan-turing-institute.github.io/AutisticaCitizenScience

One of the things that participants who want to contribute to the project often ask for is a really clear step by step guide to contributing.

We have the contributing guidelines but they're very focused on GitHub at the moment, so updating those to include contributing to the project itself would be great.

Fine to make a specific page though if that's easier.

We have ethics approval! Let start asking folks what we should build and how they would like to interact with the platform ✨