The Inclusive UX Research Playbook from CVS Health® Inclusive Design

By: Greg Weinstein and Erica McCoy

Photo by Markus Spiske on Unsplash

UX research as a field has historically excluded disabled people. This exclusion was not always deliberate; it was often the result of broader social exclusions of disabled people, along with the perceived difficulty of recruiting and accommodating the access needs of disabled participants. Yet disability impacts everyone, affecting people living with permanent disabilities and those who experience temporary or situational disability. Because all of us will encounter disabling experiences at some point in our lives, the intersectionality of disability means that UX research focusing on the diverse and specific needs of people with disabilities provides the opportunity to uncover and remove barriers that impact more people across more identities.

The CVS Health® Inclusive Design team’s Inclusive UX Research program aims to collaboratively shape thinking with teams across the enterprise by helping our colleagues understand the experiences and needs of our disabled customers. Our user research with disabled participants supports CVS Health’s mission to provide health and pharmacy services that work for everyone, regardless of ability. We think of inclusive UX research not as a separate discipline, but rather as a lens through which we make our work more inclusive and promote inclusive experiences for CVS customers and patients. We also recognize that our approach is only one path to inclusion in research, and that disability is only one element of identity that research should include.

No matter how you approach inclusion in your work, one thing will always be true: inclusion can only be achieved through planning and deliberate action. It is worth the effort, and we’ve found many benefits in inclusive UX research with disabled participants:

• By understanding the needs of disabled customers, we can help create more inclusive experiences that serve users’ diverse needs.
• Inclusion is good for business. Worldwide, an estimated 1.3 billion people experience significant disability. Together with their friends and family, disabled people have over $13 trillion in annual disposable income.
• Inclusion is good for a company’s brand reputation. Disabled customers and their families are loyal to businesses that demonstrate a desire to understand and serve their unique needs.
• Inclusive UX research can help conform to accessibility standards, like the Web Content Accessibility Guidelines (WCAG). It can also enable you to go beyond accessibility guidelines by providing insight into people’s lived experiences and how they might be improved.

While we are encouraged that UX research, and experience design more broadly, have made great strides towards being more inclusive, we also recognize that there is still a lot of work to do.

What This Playbook Is

By sharing this Playbook, we intend to give some visibility into how we, on the Inclusive Design team at CVS Health, have created and iterated on our Inclusive UX Research program. We hope that these plays will help other design and research teams adapt their approaches to be more inclusive and that they will encourage reflection on, and discussion of, the ethics and interpersonal dynamics of research with historically underrepresented communities.

What This Playbook Is Not

This Playbook is not an end-to-end guide to conducting inclusive research, nor is it a guide to choosing appropriate research methods. The methods and overall progression of a research project do not change when disabled participants are involved. We believe that any research method that can be used with non-disabled participants can also be used with disabled participants. We assume that readers already have a baseline knowledge of UX research methods and processes, and that these plays can help make those methods and processes more inclusive.

Inclusive Research Plays

Play 1: Take an “inclusion first” approach to research

Making research inclusive requires deliberate attention and action; it does not happen by accident. When you include people with disabilities (or other historically underrepresented groups) from the start of a project, you create a strong foundation for all subsequent design work to be inclusive as well. Inclusive research is thus a key part in a broader “shift left” approach to inclusive design, which aims to make the entire design and development process inclusive of disabled people.

An “inclusion first” approach suggests considering which historically underrepresented groups are likely to be most impacted by your work, and then recruiting participants from those groups to be part of your research. Over time, you will find your participant groups growing more inclusive in many directions.

For those who are skeptical about an “inclusion first” approach, consider that disabled people are people, full stop. Their goals and needs are not necessarily defined by their disabilities. When you include disabled participants from the beginning, you learn about many of the same needs and challenges as non-disabled participants. You also identify accessibility barriers early in the process when it is easiest to address them. You can effectively create a better experience for everyone by conducting “inclusion first” research.

Play 2: Get familiar with assistive technology

Because disabled research participants rely on assistive technology (AT), researchers should familiarize themselves with the different devices and terminology. Assistive technology can be anything — low or high tech, digital or analog — used to bridge the gap between a person’s abilities and the designed environment. Some common digital assistive technology includes screen readers, magnification and color inversion tools, voice control, and switch systems.

While it’s not necessary to know about the different types of assistive technology in depth, it is helpful to understand the larger categories of AT and how disabled people use them. This way, you can more easily anticipate which groups are most likely to be impacted by the product or topic you are researching, and you can also perform basic accessibility checks on your research materials.

Every assistive technology user is unique in their needs, preferences, and setup. We like to start each session by asking participants about their access needs (not disabilities or diagnoses) and the assistive technologies they use. Over time, you will learn about assistive technology directly from the people who use it, as well as how people customize it for their own experiences and needs. As you become more familiar with assistive technology you will be able to better distinguish between experiences that are potential problems or blockers for AT users and experiences that are merely accessibility issues with the materials used in your research.

Play 3: Recruit participants by assistive technology or functional need

In general, we discourage recruiting disabled participants based on a specific disability identity (such as “blind” or “d/Deaf”). Such an approach should only be considered when you need feedback from a specific disability community. Recruiting should then be done through an organization that serves that community directly.

Instead of recruiting by disability identity, we recruit by assistive technology or functional need. Each approach has benefits, and which you choose depends on the needs of your project and your recruiting options.

Recruit by assistive technology

Recruiting by assistive technology has some obvious advantages. It is a straightforward, objective way to identify potential participants. It is also beneficial when you are conducting research where you are specifically interested in learning about the interaction of a particular AT with your product.

Some assistive technologies map very strongly onto specific disabilities. For example, most screen reader users are blind. This may seem like an advantage (and in some ways it is), but do not use this type of recruiting as a proxy for disability identity. Every broader disability group will have a wide range of experiences, approaches, and needs — just like a group of non-disabled people. If you recruit a group of screen reader users expecting to learn how all blind people think, you are going to be disappointed — and you risk adding rather than reducing bias in the design process.

Recruit by functional need

A second way to recruit participants for accessibility-oriented research is to focus on functional needs. A functional need refers to what someone requires in order to engage with a particular product or service. It is a description of what features something must have for a given person, with their unique abilities and contexts, to interact with it.

For example, a functional need for a blind user of a website might be to access the site without being able to see its visual layout. Someone in a wheelchair, on the other hand, might have a functional need to get to the second floor of a building without using the stairs.

When you recruit research participants by functional need, you focus only on the goal and what is needed to accomplish that goal. There are many reasons a person might have a particular functional need that is not limited to a permanent disability. For instance, someone wheeling a heavy suitcase or carrying several bags of groceries may not be able to carry everything up the stairs, even though in other circumstances they might be able to use the stairs. These experiences are not equivalent to traveling in a wheelchair, but the functional needs overlap. When you are aware of these overlaps, the populations helped by inclusive research get substantially larger.

By focusing on users’ functional needs, you are learning about barriers and potential design solutions. Any time a barrier highlights a functional need, it is because of a mismatch (Homes 2018) between a designed environment and a user need. When you recruit based on functional need, you focus on that mismatch and the diversity of contexts in which it arises, which, in turn, allows you to create much needed design solutions.

Play 4: Learn etiquette about disability and apply it during research sessions

Learning and practicing good disability etiquette signals to disabled research participants that you respect their experience and expertise and that you are interested in listening to and learning from them. We can provide only a brief overview about etiquette in research, but there are many excellent resources you can consult, such as Disability Sensitivity Training Video, Disability Etiquette: A Starting Guide from Disability:IN, and Demystifying Disability: What to Know, Say, and How to Be an Ally [Landau 2021].

Learn about the variety of disabilities that people experience.

“Disability” is not a singular experience; rather, disabilities can encompass sight, hearing, speech, cognition, mobility, mental health, and many other areas of experience. Learn about these disabilities, their associated functional needs, and some of the unique etiquette conventions for each group.

Never assume anything about a person’s needs or experiences; it is ok to ask.

Disabled people frequently experience violations of their personal space and bodily autonomy by people who assume they need help. These experiences are uncomfortable, unpleasant, and potentially traumatizing. Whether you are trying to recruit participants in person or interviewing someone online, do not do anything that will interfere with their ability to control their situation.

Use contextually appropriate language.

It is perfectly acceptable to use the word “disabled,” especially if you keep in mind that in design, disability is substantially a failure of design to be adequately inclusive. Some people prefer person-first language (“a person with a disability”) and some prefer identity-first language (“a disabled person”). There are communities where there are more established patterns, such as the d/Deaf and autistic communities, both of which tend to prefer identity-first language. However, in an interview, you can never go wrong by mirroring the language that a person uses to talk about themselves.

Play 5: Be transparent about consent and sensitive to the activation of trauma in research sessions

Including historically underrepresented people in research, including those with disabilities, increases the potential for activating trauma. As researchers, we need to be aware of these potential risks because it is our responsibility to avoid harm, both to our participants and ourselves.

Be transparent during recruitment.

Eliminate ambiguity and, as much as you are able, tell people what the research is about and what the session will entail. If necessary, provide any content warnings during the recruitment phase. By setting expectations early, you allow people to make an informed decision about whether they want to participate. When people do choose to opt in, collect only the necessary information needed for them to proceed with participating.

Informed consent

Begin every session with a statement of informed consent that sets expectations on what the research is about and lays out the rights of the participant. As part of our informed consent process, we let participants know that their feedback will remain anonymous, that they can skip any question they do not wish to answer, and that they can end the session at any time without giving a reason. Whatever your consent looks like, ensure that participants understand their rights, give their consent, and know that they can withdraw their consent at any time throughout the session.

Do not ask about topics irrelevant to the research’s purpose.

If a question or topic has the potential to lead to difficult or uncomfortable conversations, remind participants that they can go into as much (or as little) detail as they feel comfortable with, and remind them periodically that they can skip questions or take a break. Empower participants to drive the conversation. Pay careful attention to participant demeanor, attitude, and responses, and know when to move away from a conversation or line of questioning that is causing distress. Redirect the conversation in a way that helps participants decompress and move back into a more positive headspace. You may also consider ending a session early if it’s clear that the participant has become too uncomfortable. When possible, be ready to provide support resources to a participant who may need them.

Researchers can have trauma activated, too.

Be aware of the potential for anyone involved in research to have trauma activated by a research session, including yourself. Within the Inclusive UX Research program, we prepare for sessions by having multiple reviewers of our research guides and preparatory conversations about any topics that might be difficult for the people involved. We always have at least two researchers in every interview so that there is someone who can double-check the demeanor of both participant and interviewer and who can privately suggest ways to diffuse a conversation that has gotten uncomfortable.

Play 6: Develop and socialize inclusive insights from your research

When developing insights, focus on ways in which your research revealed mismatches between participants’ functional needs and their contexts. Consider the following questions:

• What were the participants’ methods of access to the context (design, service, etc.) that you were researching?
• What mismatches did you observe between access methods and designs?
• What other people or groups are likely to be impacted by the mismatches you observed?
• What hacks, workarounds, or adaptive strategies did participants demonstrate? How might these help you improve your designs?

When sharing inclusive insights with stakeholders, include evidence to support your observations and recommendations. Video clips from research sessions are an excellent way to demonstrate the users’ problems and generate empathy. Be sure to explain why participants encountered a particular obstacle; many of your stakeholders are likely observing disabled users of your products for the first time, and they may not initially understand why blockers and challenges occur.

Inclusive UX Research pushes boundaries

Inclusive UX research can help advance any UX research practice by learning directly from people who have historically been excluded from the product design process. By paying special attention to addressing current and historical exclusions of people from UX research, considering human diversity as key, challenging normative assumptions, and including all dimensions of human diversity, inclusive research can inform strategic directions and push boundaries in ways we have never considered.

References

Holmes, Kat. 2018. Mismatch: How Inclusion Shapes Design. Cambridge: The MIT Press.

Landau, Emily. 2021. Demystifying Disability: What to Know, What to Say, and How to Be an Ally. California: Ten Speed Press.

We would like to thank Anna Thielke, Kevin Kidd, and the entire Inclusive Design team at CVS Health for support, encouragement, and feedback while writing this article. In addition, many thanks to Beth Koloski and Tyler Himes, whose generous feedback was essential to the development of this article.

[The acknowledgements of this article have been edited to recognize all the contributors who played a role in shaping the Playbook.]

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