---
# System prepended metadata

title: Citizen Science Guide

---

:::success
Yes :tada:
:::
[name=Georgia] Using this for lists/solutions  

:::info
This is a message :mega:
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[name=Georgia] using this for AutSPACEs case study 

:::warning
Watch out :zap:
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[name=Georgia] using this for things to consider/ponder

:::danger
Oh No! :fire:
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# Citizen Science Guide

[TOC]

> for the Open Humans submission
> see [google doc](https://docs.google.com/document/d/1DDeHdzhykWt3kY6TCNqyvTXxlg4M_MGf4uDmO2G16XE/edit#) for more information 

Ethics, good practices 
Overview / Essay / Contributory text 
4 pages, 9000 characters 

AutSpaces: citizen science research ethics in practice (Autspaces team)
Will become part of the Ethics/Good Practices part, as a project highlight/example in a text box highlighting ethics in practice

> **Notes from Kirstie on 18 August**
> 
> I think you need a different introduction here - assume that the 200 words you've written is off in a box somewhere, but not the _actual_ start to the chapter.
> 
> The nice thing about an intro is that you can just write "this is what we're going to cover" after you've got the rest of the structure down :grinning:

[name=Georgia] The current word count is around 2100 

## Intro
> important phrases [color=#98ceff]
> - Through careful planning, researchers have an opportunity to create a positive impact on the communities 
> - With care and attention, you can make your research safe, empowering, inclusive and open, for collaborators and participants. 

:::danger
This chapter discusses the ethical implications of citizen science presented through the lens of a case study. We provide topics for reflection, and present practical steps to take during research so that your work can make a positive difference and folows good ethical practices. 
:::

`inclusion empowerment, safe guarding, etc `

There are a number of elements to take into account when planning and conducting citizen science. Depending on your approach, citizen science researchers can make a significant impact (positive or negative) on various communities throughout the research process.

~~have a positive impact through the research process itself~~ ~~,as well as through resulting outputs.~~ With care and attention, there is an opportunity to make your research safe, empowering, inclusive and open, for collaborators and participants alike. 

~~This chapter will help you think through the ethical implications of your research, and guide you in how to manage your project so that it follows good ethical practices. It will provides topics for reflection, and gives you practical steps to take so that your research makes a positive difference.~~


> you may be able to add a footnote or "contribution thanks" when you mention the use of a case study [color=#bca0dc]

> this could be taken out as it's addressed by the above section. [color=#98ceff] 
> > ~~Throughout this chapter, we will be using an open, participatory science project, AutSPACEs, as a case study for putting ethics into practice. Resources used to run the AutSPACEs project are openly available online at https://github.com/alan-turing-institute/AutisticaCitizenScience for you to download and adapt for your own project.~~

## 200(ish)-word intro: 

:::info
## AutSPACEs: Case Study

AutSPACEs is a community-led citizen science project doing innovative research to make environments more accessible for autistic people.  

Lab-based studies have shown that autistic people often process sensory information, such as light, temperature, and position, differently to non-autistic individuals. However there is a lack of understanding in how this impacts daily life for autistic individuals. ~~It is considered that~~ As a result, many public spaces have not been informed to include, and be accessible to, autistic individuals who may find spaces to be unpleasant or inaccessible to autistic people as they might be too bright, loud, or busy.

The Alan Turing Institute is working with Open Humans and Autistica to collect data on how sensory processing differences affect autistic people in their daily lives through a citizen science approach. We are building an online platform, AutSPACEs, where autistic individuals can ~~use to~~ share their lived experiences of sensory processing ~~in their daily lives.~~ The platform is being built openly on GitHub, and all the resources to run the study, data collected to inform the design of the platform, as well as the code for the platform are publicly available. Autistic people have been involved throughout the research cycle, including setting priorities, making research design decisions, giving and interpreting data, deciding how to run the project, and co-authoring and co-presenting work. 

AutSPACEs is run through continuous engagement with a diverse group of autistic people, using methods such as regular co-working sessions, meet-up groups, social media, and newsletters. This project empowers autistic participants to be researchers by offering opportunities to be involved, set direction, gain skills, and make decisions throughout. 
:::



:::danger
Michael Larkin
@ipanalysis
·
Jul 28
**If used correctly, it should always be possible to identify who or what has surrendered some power over a process, and who has been empowered by receipt of that power **(IMO). It rarely ever is possible to identify this!
:::

## Inclusion and empowerment 

"Nothing about us without us” is a political term ~~which has been adopted~~ used by disability activist movements, and provides a useful framework for thinking about citizen science. 

Research on communities makes a collaborator and contributor out of all members of that community. It is therefore important to consider what role community members have in a given project by understanding the *who* and *how* of your research's reach. 

~~*Who* your research affects is important both during and after the research process, *how* it 


> There are many ways to involve and empower people during research. It is worth thinking about how to involve people so that they are empowered in the research process. [color=#ffa17a]

Consider *who* your research is likely to affect and *how* it could affect them.~~

There is a lot at stake in how knowledge is sought, presented, and shared. It can affect individuals on interpersonal, social, systemic, and personal levels. Research can change how people are treated by those around them, what opportunities and support they have, what prejudice they encounter, and how they think about themselves. Damage can be caused by misrepresentation and omission, as well as by explicit bias. All these aspects can be both mutually-reinforcing and self-perpetuating. 

There is an ethical imperative to include the people in research who ultimately stand to gain the most, or who may suffer harm if research does not reach them or represent them well. Breaking down the barriers between researchers and research subjects can be an important act of empowerment, as well as helping research to have positive impact. 

One solution is participatory citizen science, in which participants are empowered throughout the research process.

Another good question to ask is "who's not in the room" when important decisions are being made or opportunitise arise. 
Default habits of working can be excluding. Make sure you are reaching a diverse group, not just those already empowred to take part. 

:::warning
**Scope out your community**
* who will you be directly collecting data from?
* who will be affected by your research?
* who might be in danger of being excluded or left out?
* who can help your research have impact?
* who would be interested and may be able to help you?
:::

The genuine inclusion of diverse individuals is both an ethical imperative and vital for scientific validity. Failing to reach and involve a diverse group, or distorting or diminishing their input, makes research less comprehensive and nuanced, and damages the *raison d’etre* of the research by making it only fit for purpose for limited segments of the population.

Conversely, reaching a broad and diverse population offers a richer range of perspectives, improving scientific validity, and makes the impact of the research broader and more equitable. This includes a responsibility on the part of the researchers to be particularly attentive to the intersectional effects experienced by a diverse group of individuals. Researchers with diverse experiences are best placed to do this.

:::success
*Remember that every group is made up of unique individuals. Ask people what they need, and be prepared to tailor your methods of inclusion based on what people say is best for them.* 

*Inclusion is a continuous process. As your community grows, you have the chance to redsign and redevelop your inclusion processes based on increasing knowldge. A growing community is an opportunity for a virtuous circle of inclusion.*
:::

## Safeguarding your community 

It is important to think carefully about how you will safeguard the wellbeing of members of your community.

* Make sure participants are informed about what to expect when they take part in your research. Always make it clear that they can withdraw at any time without having to give a reason. You can also send participants an information sheet in advance explaining the research. 
* Have a code of conduct which is available to all research participants and require everyone to subscribe to it. Have the code of conduct clearly available on all your online spaces. Alongside this, write an escalation route with named individuals who are empowered to act if the code of conduct is breached. 
* Consider co-writing the code of conduct and other safeguarding materials with your community so that it best reflects the group's needs.
* Have facilitators available in group sessions, whether online or in-person, to make sure that everyone is welcomed and included.
* Have assigned moderators responsible for maintaining the safety and inclusiveness of online spaces. 

## Ways of working

### Planning strategy, and task management 

Doing research which is open, ethical, and which engages participants fully is likely to add complexity, which will need to be reflected in the planning, strategy and task management of your project. You are likely to have a wide range of stakeholders, and may be working with both voluntary and paid support.  

* Make sure stakeholders are value-aligned. You could do this, for instance, by creating a "values" and "outputs" document which lays our what you will do and how you will do it. This can help to set expectations early on.
* Be prepared to be flexible. If you are engaging with a community of people, you won't know in advance what steer they will give you, or what new insights and challenges your will encounter as your community grows. You also don't always have control over volunteer's time. Be clear in the planning stage what you **don't** have control over, as well as what you do, and leave room for this. 
* Create an onboarding process. How will you introduce people to your project?  Is there a website you can direct them to? How can they easily start getting involve
 	* Consider making a simple list of tasks for people which you can hand over which aren't too difficult or high risk.
	* If you are using aa GitHub repository, having some straightforward tasks labelled "Good first issue" with clear instructions will make it easy for the open source community to begin to help you
* Create a roadmap of the project. There are many different formats. For instance, the AutSPACEs project has a comprehensive Roadmap linked to issues and milestones on GitHub, which will be regularly updated as the project progresses. This clarifies tasks and goals of the project for the community, and is especially important in managing a combination of volunteers and professional researchers. The roadmap has been co-created with community members and is available in multiple forms (Markdown and Google Docs), to make the roles and responsibilities clear to a wide range of individuals.  
* If you are using GitHub, it is helpful to have issues clearly assigned, so that the open-source community are aware of what is being worked on and who is doing the work. This makes it easier for collaborators to take up work which they can see is available, and avoids duplicate work. 
* One option is to have regular slots for co-working. You can arrange with inidviduals or have drop-in sessions which are open to the public. Regular co-working can foster community and help keep up momentum. 
* For co-working sessions and meetings where the topic isn't sensitive, consider taking collective notes, which can then be made public. This helps to a)keep the community informed of what is happening so that people who are not in attendance are not left out, and b)make your research process open. There are lots of different resources to support this, for instance thee AutSPACEs project used HackMD and Google Docs to take group notes and publish these online. 
* You may also want to consider creating tailored resources. For instance, for the AutSPACEs project a Netlify page was created giving the information which was most helpful to members, following user testing.  

### Communication 

Often, research findings are shared through papers published in closed scientific journals, conferences, and expert seminars. Yet these methods of sharing knowledge are not always accessible to non-professional scientisits, and can shut people out of the research process who could otherwise be involved.

:::warning
Three good things to think about when considering how to communicate your project are: 

* **Regularity**: having ongoing, regular updates is important to both a) build and understanding; and b) keep people engaged 
* **Variety**: if you would like to reach a diverse group of people, it is good to have a number of different channels and styles of communication (for example diagrams, lists, text).
* **Clarity**: Consider how you will explain your research to lay-people who do not have a scientific background. Make it as clear and jargon-free as possible. 
:::

Involve other people in your communication strategy who will be able to guide you in how others might receive your work. Consider having a non-professional scientist help you draft a lay-version, for instance, or invite members of your community to a co-working session to help you think about channels of engagment to reach other groups which you may not have been aware of. 

:::info
For the AutSPACEs project, a variety of communcation methods were used, including:

* Regular newsletters 
* Social media channels: Twitter and Facebook
* A website version of repository
* Lay-person summaries
* Co-authored blogs 
* Webinars

Since reaching autistic peoeple was the priority, autistic community members co-create the communication strategies and helped write and review work.
:::

## Trust and transparency 

Doing citizen science openly has a number of benefits: 

* Open research is more **reproducible**. This builds scientific validity, and opens opportunities for increased peer scrutiny and support
* Open research is better for **community inclusion**. The more of the projects plans and outputs are available, the more empowered community involvement can be. 
* Open research can increase **engagement**
* Open research **supports other researchers**, and can help spread ethical practice both by making it more visible and easier to do.  

All research requires resources and actions to be taken which make it possible. While is can be tempting to focus only on the outcomes of projects, all of the planning and materials that support the research process are also incredibly valuable. They help your community understand how you run the project, and they are useful to the wider research community too. 

:::warning
As well as **papers**, **code, documentation, and data**, consider openly publishing: 

* Roadmaps and plans
* Protocols/study methods
* Agendas
* Notes/community input 
* Links to newsletters, talks, and presentations
* Guides to your research for different audiences 
:::

Another important part of being open and transparent with your community is being clear about how you are using people's data: how it will be collected, where it will be stored, what it will be used for, and for what purposes and with whom it will be shared. Where data is sensitive, we recommend publishing it line with FAIR (*findable, accessible, interopreable and reproducible*) data principles. [Link to another chapter]. Try to make this process as clear as possible, for instance by using diagrams, icons, and step-by-steps. 

:::info
The AutSPACEs project involved collecting sensitive data taken from discussion sessions with community members. In order to make sure that study participants had agency over their data and their privacy was protected, while also publishing the data openly, we took a number of steps:

* gave all participants a flow chart showing how their data would be used along with a text description before they took part in the study 
* took out all personally identifying information from the dataset
* shared all data before publication with participants so that they could make changes or request removal 
* co-created guidelines for reviewing data for publication with an autistic co-researcher so that they were more accesible for the community 
* published the dataset openly on the project's GitHub repository and shared a link to this dataset with all community members
* published accompanying material inclulding guidelines on how the dataset was created and a key to the data alongside the dataset.
:::

## Sharing platforms and opportunities

:::danger
KW: This is a great conclusion, lets keep these points and turn it into a closer.

Please quote this tweet, absolutely bang on: https://twitter.com/ipanalysis/status/1420359304255840257?s=20, and maybe shout out Sarah (autistic woman, working at Autistica) who asked the question in the first place.
:::

A research position often comes with many priviliges: you may have credibility and opportunities through your institution, platforms to speak and share knowledge, such as via conferences or submissions of papers, and opportunities to grow networks and collaborate. Where possible, consider sharing these platforms with members of your community. For example, recruit co-authors, co-presenters, and co-facilitators who may not have these priviliges. 

Truly ethical research requires self-reflection and an awareness of the wider system of which your research is a part. Without this, terms such as "empowerment" can lose their meaning. 


# End

### From form - words to include? 

**example - AutSPACEs**
*A major goal of the AutSPACEs project is to innovate new ways of conducting research so that it is open and participatory. This means that there is a constant process of designing, learning, and refining ways of working and engaging with affected stakeholders as fellow researchers. This includes via. fortnightly meet-up sessions, providing one-to-one support where necessary to include individuals with learning differences or communication barriers, co-working on GitHub across time-zones, organising formally structured discussion sessions, sending monthly updates which deliberately reports diverse voices from the community, and rigorously sharing or giving public platforms to diverse community members (for instance offering opportunities to stakeholders to present at conferences).*  

We provide a variety of routes to involvement in the project, including those suitable for people with learning challenges, dyslexia, and social anxiety. In some cases, this may require researchers to tailor their method of interaction to support those with different accessibility needs to take part, for example communicating via. voice message or providing one-to-one support to create an account on GitHub. Our research team includes members from diverse groups such as those with autism and co-occurring conditions and is supported to take these additional steps to increase diversity and onboard new citizen and professional researchers.  

Ultimately, we see this as a process requiring constant vigilance and effort, but one which is vital, and which presents the opportunity for a virtuous circle of involvement.  

As an open, participatory research project with a community of both professionals and volunteers, having clear roles and responsibilities is vital. We will ensure this via.:  

~~Having a comprehensive Roadmap linked to issues and milestones on GitHub, which will be regularly updated as the project progresses. This will clarify tasks and goals of the project for the community. The roadmap has been co-created with community members and is available in multiple forms (Markdown and Google Docs), to make the roles and responsibilities clear to a wide range of individuals. ~~

~~Having issues on the project’s public repositories clearly assigned, so that the open-source community are aware of what is being worked on and who is doing the work.  
~~
We have publicly available templates and protocols which we follow for our engagement and research activities. This includes information on what roles are needed for each activity, for instance showing what facilitation is needed for a co-working session. This allows the organiser to resource the activities and assign roles appropriately and consistently.   

We create fortnightly reports as well as sharing monthly updates to the community for accountability on progress and opportunities for new roles and responsibilities to be taken up by community members.  
	
Alongside a record of our activities and outputs, we also publish on our GitHub repositories the protocols, templates, and resources (such as template invitations, consent forms, and participants information sheets) for conducting our studies, so that anyone interested could reproduce the project by following our steps and using our materials. 

We provide documentation to explain our code and data to people unfamiliar with the project. We have designed our repositories with appropriate READMEs and filing structure to be accessible to people who are unfamiliar with the project.  We offer step-by-step guidance on how to build the platform locally and what the dependencies are. We also offer resources for learning the skills required to build the platform and to learn about the wider context for autism research.  
 
Our repositories include summaries of the project design, purpose, and outputs written in non-specialist terms for lay people. These use style guides from our partner Autistica, and are tested with members of the community. We also provide accompanying diagrams and video explanations, as well as contact details for people who will be able to offer more explanation if needed. We have iterated the design of our repositories multiple times based on community feedback to improve their accessibility.  

Qualitative data from formal discussion sessions is accompanied by guidelines detailing how the summary data reports were made, step by step. These have been co-designed with an autistic citizen researcher to maximise the clarity of language and ease of understanding for autistic people. The data includes a key which shows how it has been labelled.  

Our repositories include summaries of the project design, purpose, and outputs written in non-specialist terms for lay people. These use style guides from our partner Autistica, and are tested with members of the community. We also provide accompanying diagrams and video explanations, as well as contact details for people who will be able to offer more explanation if needed. We have iterated the design of our repositories multiple times based on community feedback to improve their accessibility. 

The key stakeholders of the project are autistic people. Autistic people are also part of the research team and help to design the communication strategy. We do not consider it appropriate to speak to any stakeholder groups in a way which excludes autistic people, so all our communications are designed to be accessible to autistic people. We follow language and presentation guidelines based on the expertise of Autistica in writing for autistic people. Autistic people are also involved in the writing/reviewing/presenting process. 

There is a technical barrier for some in terms of entry to project involvement in particular activities like coding. We do engage with a cohort of open-source developers using technical terms and concepts, and for these sessions to be productive we do sometimes require technical and project knowledge for people wishing to take part. We offer support and upskilling for anyone interested in this aspect of the project, whether or not they have prior technical knowledge. This includes supporting individuals with learning differences. We also report on technical progress broadly to the community language/terms suitable for laypeople in our fortnightly meet-up sessions and monthly updates. 

## Rough Notes of content to include 

* Ethical practice:
	* community engagement
	* data management 
	* layperson summaries
	* multiple forms of dissemintaion
	* diversity and inclusion 
* Tools for ethical pracitcs: 
	* GitHub
	* HackMD
	* Google docs
	* Newsletters
	* Tinylettr
* Imperatives
	* Outreach
	* Avoiding tokenism 
	* Transforming involvment into leadership (empowring citizen scientists)
