Five Fundamental Principles of Inclusive Research

Thanks everyone and welcome to our session today.

Irith and I are going to talk to you about the five fundamental principles of inclusive research as a quality assurance framework that you can use for your teams.

To get us started, I'm going to do an acknowledgement of country.

We acknowledge the Gadigal people of the Eora Nation as the traditional custodians of the country we are meeting on today.

We pay our respect to the Elders of the Eora Nation, both past and present.

And we, extend the respect to all Aboriginal and or Torres Strait Islander people in attendance today.

Irith is going to tell you a story.

Have you ever unwittingly set up a research environment that caused harm?

I'm going to tell you about a time when I did that.

There was a project where I was interviewing students, university students with disabilities, and I wanted to capture clean audio for auto transcription.

So my clever idea of how to do this without a quality microphone was to ask participants to wear a headset that was plugged into my, laptop while we were having a face to face chat.

I had checked for sensory safety in selecting what room we were going to be in.

I'd looked for rooms with, natural light, with dimmable light, where there was movability, we, could move the, tables and chairs.

And I'd even checked a room that looked great on paper, but when I went there had a dreadful smell.

Well done me.

So one of the students that I spoke to used assistive technology to access information because they were autistic.

And at the 55 minute mark of our 60 minute interview, they stopped and suddenly said, Oh, is it okay if I take this headset off?

It's getting uncomfortable.

And I responded with, Oh, it's okay.

There's only a couple of minutes left, then we'll be finished.

So I proceeded to ask the final question and we wrapped up.

I said, Oh, thank you so much for helping us with our project.

It's really valuable.

And we'll email you your remuneration today.

So after they'd left.

And I was packing up, I thought, maybe I should check that headset.

It's just an ordinary headset.

Millions of people wear them every day.

I put it on and I was immediately mortified and horrified.

It was unbearably uncomfortable.

I had to take it off straight away.

It was intolerable.

And I was horrified at the harm that I had caused that person, not just that, they were uncomfortable in the moment, but being autistic, I could, I would have sent them into a sensory overload that could have distressed them for hours, if not days after what the pain that they experienced.

And apart from the harm that I caused, I also gave them no control.

I treated them like a research subject, not like a person generously sharing their lived experience to make my research look good.

What could we have done differently there, if you were in that kind of situation?

What kind, what can you do to avoid harming any of the participants you have through your research or usability testing?

What could have been done to respond appropriately when they disclosed that they were in pain?

Reflecting on these experiences and collaborating with people with disability and through the Research Ops community, we, Irith and I developed our Ozewai Workshops.

Based on the five fundamental principles of inclusive user research.

Using these principles as a QA framework benefits you, your team, but most importantly, your participants.

We've been running these workshops over the past year with our wonderful co facilitators Adam, Andrew, who we are very lucky to have with us today, and Scott.

We've learned more about how to implement these principles in real life.

Today we're going to give you just a quick taster of the principles from our workshop.

Enough to give you a QA checklist for inclusion.

And our approach is going to be, we're going to share one of the principles.

We're going to do a little activity and reflection and we have some, printed, there's some papers that lovely the ICC have left with us and pens at the end of each row.

So if you don't have your phone, maybe you could use that.

And then we're going to go through the checklist and you can take that back to your team as some practical steps.

Our first principle is immersion and there's an image here of a young boy jumping off a jetty with his arms and legs splayed out and he's jumping into a large body of water, probably a lake or a bay.

An immersion is about a personal commitment to continual direct engagement with people with disabilities.

Immersion is actually the only way to a deeper and broader tacit understanding of lived experiences of people with disability.

Immersion needs to include trauma informed approaches and stigma aware approaches.

And there are actually opportunities for you today to start that immersive practice by talking to, OZEWAI or Centre for Inclusive Design or Intopia, who, I think all have people with lived experience at, on their booths today.

We're going to run an activity now.

It's going to be about 30 seconds.

We'd like you to either get your phone out or think about yourself or maybe take the notepad at the end of the row.

Please ask people to bring it along with you.

We're going to search on hashtag accessibility and or hashtag A11y, so A L 1 1 Y, which are the 11 characters between the A and a Y of accessibility.

Bring up your favorite social media, and do a search of, hashtag accessibility and see if you can find someone to follow.

See if you can find someone that's maybe in a role that has lived experience and sharing those experiences, some tips or tricks that you're looking for.

If you don't have social media, please feel free to just jot down what kind of community groups you might like to reach out to.

Or volunteer, or find out more from those community groups.

So we're going to give you 30 seconds to actually do a little bit of search, and then we'll come back to our checklist.

Just while you're doing that too, there's a fun fact about hashtags.

Use CamelCase in your hashtags.

It's actually, easy for some of the assistive technology to read out, the separate words.

Otherwise, they tend to read them out all in full.

Something like hashtag superbowl could also be superbowl.

And you will have to do that manually in most cases.

To change it from Superbowl.

Okay, so hopefully you found someone to follow.

And now we're going to our checklist.

Alright, so let's start our QA checks for immersion.

When we're thinking about our planning, thinking about who, will we listen to and connect with?

And how will we work?

How will participants consume information?

How will they be accommodated?

What are our plans for that?

These are things to think about.

And thinking about What training do we need to do internally to set ourselves up to support this?

What remuneration are we going to offer our people with disability participants?

What preparations can we make to set ourselves up to be flexible?

And what are we prepared to invest?

What resources will we invest, including our time, in order to operate in an inclusive way?

Yep, and in retrospective, what kind of assumptions have you made?

What kind of expectations did you have and what kind of behaviors?

So don't expect people to be eager to be involved or grateful.

Don't try to solve everything.

If joining community groups disclose that you're a researcher and that's what you're there for.

So now we'll go on to our second principle, which is safety.

And, we have an image of an orange life ring floating on, a dark blue body of water.

It looks like it's deep water.

And for icons, there's, like an electrical hazard icon, a, like a poison skull and crossbone hazard icon.

There's an icon of, a head with a cog inside, and there's also an icon of two hands supporting a person.

And safety in research operations encompasses four factors that can impact the safety of well being of participants and researchers.

So although we're talking about inclusion, inclusive principles for participant safety today, these all actually equally apply to your research team members.

That's a whole other workshop, a whole other presentation.

But if you're thinking about team safety, you can apply exactly the same principles.

So in our workshops, we describe those four factors as general safety, Physical safety, cognitive safety, and psychosocial safety.

So safety is an extremely complex and sensitive area.

All of the principles are aimed at minimizing risks, but we can never say that we have a 100 percent safe environment for everybody all the time.

But once we acknowledge that, We can invest, we can plan, we can be vigilant, and we can be reflective.

Always looking for ways to improve.

Immersion is actually the key to understanding safety.

Immersion helps us to truly understand how to minimize risks.

Immersion allows us to become educated in safety practices from the point of view of people with lived experience.

The experiences that people with disabilities recommend, sorry, recognize and implement safety practices.

And also for us to understand ways that people with disabilities have unfortunately experienced harm.

An example of that is without some level of immersive understanding of the experiences of autistic people, I would not have understood the scale of the ramifications of the pain that I caused my participant that day.

Yes, so for this activity, we're going to think about, we'd like you to think about, reflect, of did you, do you have a safety story where somehow you thought that maybe that your participant was, in harm's way, or you have a fear of causing harm.

Maybe that you are afraid that you'll say something wrong, or you'll offend someone.

There's those kinds of things to start to reflect on, as we go through the rest of the principles.

We're going to give you 30 seconds to just jot down, maybe that story, and what kind of things that you would be thinking about if you were afraid, or scared to offend someone.

So I'll give you 30 seconds for that.

So going on to our planning for, safety.

How, will I create, a safe moderation guide?

How will I set options for duration and timing?

How will I allow the participant to decide on how they want to be engaged?

How will I check all physical and digital touch points, allow for a hundred percent flexibility or facilitate wayfinding?

Wayfinding?

How will I offer the accessibility options that we already have in place or, provide access to any follow up support if we opened a can of worms during the research session?

And thinking about what will I do?

What will I do to respond if a planned appointment falls through or adjust the pace for each participant?

How will I find out how to not offend people?

How will I, if I notice that I've made someone uncomfortable, when someone communicates that they are uncomfortable, how will I respond?

And in retrospective.

What kind of, did you understand if you might have caused someone discomfort or did you manipulate someone in some way where you, they might have been uncomfortable?

Was there a power imbalance?

And did you feel surprised if they wanted to change their, their situation?

Don't ask about their personal experiences or disability.

Don't try to reassure someone that they can trust you so that they would disclose something.

Don't try to fix, improve or educate a participant.

And be ready to adapt if they want to change.

Don't act surprised if the situation changes and they're not feeling comfortable.

You're the one that needs to be flexible.

So now we'll go on to our, third principle, which is diversity, and again, immersion is the key to understanding diversity, and we have an image here, of, multi it's like a cartoon drawing of multi coloured people wearing multi coloured clothes in three sort of concentric circles, all holding hands.

So there is a lot of diversity in the experiences of people with disability, especially when it comes to how they access technology.

And it's not helpful to generalise too much about best practice.

We need to understand where there are overlaps between people's experiences and their use of different technology.

So the accessibility guidelines are no substitute for testing technology directly with people with disabilities.

So for this activity, we'd like you to think about who might use a screen reader to access the internet.

We've got some people who are legally blind, people with dyslexia, people on the autism spectrum, people with ADHD or ADD.

People who are partially blind or all of the above.

So I'd like to think about, reflect on what your options would be if you chose those.

If you feel comfortable, maybe even talk to the person next to you, and discuss that or jot it down and think about it yourself.

So I'll give you 30 seconds.

Feel free to talk to your neighbor too.

And of course the answer is all of the above.

But any of those options could count.

So you can find resources on the OZEWAI website, including links to examples of how different people use different assistive technology, types of screen readers, and testing resources.

We've put the link up there, it's aussieway.

Org forward slash resources forward slash inclusive dash research.

And those resources are up there now for you to access.

We will add this slide deck to that page as well at the end of the session.

So let's go on to how we're going to plan for this.

So we actually use exactly the same planning protocols as for immersion and safety, but this time with a divers lensity.

How are we going to plan to do those things, accommodating differences across similar people?

And how are we going to plan to do those things, accommodating similarities across diverse groups of, participants?

And in retrospect, what assumptions did you make, or how did you behave?

Or how did you make the person feel?

So some of the don'ts here is don't assume similar conditions would indicate similar accommodations.

Don't assume a participant's accommodations don't change and don't assume what works for one participant will apply to everyone else.

Now we get on to our fourth principle which is equity and again, immersion is the key to understanding equity.

And we have a cartoon illustration here that's divided into two.

The left hand is labelled equality and the right hand is labelled equity.

And on the left there, it's, a playing field with a fence and three spectators trying to watch what's happening.

There's three boxes against the fence.

A tall person is standing on the box and has lots of room to see over the top.

A medium sized person is standing on the box and can barely see over and there's a person in a wheelchair who also has a box but can't do anything with that, to see over the fence.

And on the right hand side, the equity side, the tall person no longer has a box to stand on but they can still see clearly.

The medium height person has two boxes to stand on and they can see very clearly.

And, the wheelchair person has a ramp that they have gotten to the top of and they can also see clearly.

Whereas equality means providing the same to all, equity means recognizing that we do not all start from the same place and must acknowledge and make adjustments to imbalances.

The process is ongoing, requiring us to identify and overcome intentional and unintentional barriers arising from bias or systemic structures.

And that quote's from the National Association of Colleges and Employers.

And it's important to note, that research has always been a fundamentally inequitable practice.

There's an image here of, a man wearing like a surgical mask.

He's got a white lab coat on, latex gloves, and he's holding a lab rat.

And this is an illustration of the extreme power imbalances traditionally in research.

This model has always been extractive and exploitative.

And that's the model that we've all been trained in.

That's the mindset that we've inherited.

And it cannot change without conscious effort.

Inclusive research is actually counter cultural to the way that we've been trained to conduct research in all disciplines.

So for this activity, we've got, basically an example of a, participation form that you might want to send out to possible participants.

On the form there's, these answers can be changed later.

Just tell us what you would prefer at this point in time.

When would be the best time of day for you to be interviewed is the first question.

And the second question, which interview duration would you prefer?

30 minutes, 45 minutes, 60 minutes?

We'd like to spend 30 seconds to reflect on this, are you able to read these questions easily?

Do they make sense to you?

Do you think it's clear that you can, that the participant can change their answers if you want, if they wanted to?

And is there anything we have left out that you think should be included?

So we'll give you 30 seconds, maybe even discuss it with your neighbour if you like as well.

So we can continue the conversations, at the next break.

But let's get into our planning checks and what we'll plan for.

How will I collaborate with potential participants on their individual participation plan?

And how will I meaningfully remunerate people with disabilities for all of their time, including their advice on how I should conduct the research operations?

How will I ensure that communication processes and consent forms are accessible and be explicit about the participant being fully in control of the research process and their data or where those, there's limits to their control?

And how will I report research findings back to research participants?

And thinking about what will I do, what will I do to advocate within the research project for the need to follow the advice of participants on what their requirements are?

And how will I, remunerate people as subject matter experts advising on accessibility, not just as data collection subjects?

So in, oh sorry, in retrospective, did you prioritize yourself, and your ways of working?

So try not to be about what you need as a researcher.

Did you exploit people?

So don't expect potential participants to volunteer their time to help pilot the research operations.

Prioritize, did you prioritize people and what was meaningful to them?

When you're giving them incentives, did you only give them one option?

Or did you offer cash or equivalent?

Or checking with the participant that the incentive best suits them?

They may not want to be able, they may not be able to accept cash.

And did you pay your people with disability, participants differently to other participants?

So that's the other, treating people as other instead.

Find out how to share feedback with them on the progress of what you're, doing research on.

We talk about information and consent, but how often do you include sharing research outcomes as part of that recruitment dialogue?

Our fifth and final principle is piloting, and piloting is the essential key to safety.

And there's an image here of people in a workplace, doing a workshop.

There's a whole bunch of post it notes stuck up on the wall, and they're stood around, just looking at the post it notes, discussing.

And, there's a man with a, guide dog sitting at his feet who's taking part in that.

So when we immerse ourselves in the discussions and experiences of people with disabilities, we realize that we actually need to pilot the whole research process with each participant.

All accessibility guidelines advise testing with people with disabilities, not relying on standards alone.

For this activity, we'd like you to think about the digital tools that you use in your workplace and if they have an accessibility statement.

Whether you're a researcher, a product donor, designer or developer, check if the web software you plan to use is accessible.

So check for an accessibility statement for the tools as they're useful to find out what the barriers might be when you are developing your research preparation plan.

We'd like you now to just have a look at things like Miro or Mentimeter or Optimal Workshop and, see if there's an accessibility statement.

Or ask a colleague, about their accessibility knowledge if you can't find anything on the site.

And to test it for them, and even when you find an accessibility statement, yeah, you can't really take their word for it sometimes, so you still need to do some testing.

For this activity, we'd like you to, visit one of the sites of the products that you might use, and see if you can find an accessibility statement.

Search for product name, Accessibility.

And then even after this, if you can't find it, maybe consider how you would reach out to them either by feedback or contact form.

So we'll give you another 15 seconds for that one, but this could be a, an activity to follow up with later with your teams.

All right.

So let's look at our, planning checks about how will I test everything?

How will I check for any sensory stimuli and plain language readability of instructions?

Oops, sorry.

How will I ask the participant if they would like to test the research tools to be used in person or remotely?

And how will I check that the research process and activities are clear and understandable?

And we, when we think of retro, think about how did I, try out any physical equipment to be used on myself first?

Did I check that the readability is at a level, equivalent to seven years of education?

And did I make sure that all communication, invitations, documents are written in plain language?

Back to our story, based on these principles we've shared, particularly around the immersion, safety, diversity, equity, and piloting.

What would how would things be different?

How could I have applied all five principles before and during the interview with the autistic student?

And there's an image here of five circles all overlapping.

There's a ticked checkbox in the middle where they overlap and each circle is labelled with each of the principles.

Immersion, equity, diversity, piloting and safety.

So I could have prioritised the students discomfort and I could have confirmed that they had flexibility and full control.

And if I'd done those two things that would have supported and aligned with all five of those principles.

So what does prioritizing comfort look like?

I could have checked all the, equipment personally and I, when, the student disclosed that they were feeling uncomfortable, I could have acknowledged and apologized for, the discomfort that I caused.

And that would have supported the four principles of immersion, equity, safety, and piloting.

All participants have the right to feel respected, listen to, and kept safe.

And part of our, workshop that we've developed, we'd like to thank our co collaborators Adam Cooper, Andrew Downey, Scott Grimley and Scott Nixon and all our Inclusive Research Workshop attendees that have attended so far.

And we do have some upcoming workshops, in November if you'd like to jump on the OZEWAI website.

There's some public ones and we do run some customized workshops.

So if you or your team are looking for more specific embedded workshops, then reach out to us.

Also the link to the OZEWAI, resources that we have.

Please join OZEWAI, support the work that we're doing in this space of Shift Left around accessibility.

And also, you can follow us on LinkedIn.

And we have our booth outside along with, the others today.

Thank you.

Yeah, there's the Inclusive Research Workshops page on LinkedIn and also OZEWAI on LinkedIn as well.

Yep.

Thank you very much.

Thank you.

Applause