What does it cost to take part in research?

For Douglas the user research dog, the cost of taking part in a ‘paw’ has been the same since he was a puppy. 1 paw = 1 treat. He just wishes the cost of taking part in research was as clear.

I had to take a point out of the do you really need more research blog because:

1. the post was already long
2. the point deserved more attention than to be a bullet point in a list

I’ve spoken to people about the blog post and had chance to reflect on that point. Mainly about how it fits with the original blog, but also how it fits with doing research more generally.

So what was the point? It costs people to take part in your research. And not everybody can ‘afford’ it. And by ‘afford’, I don’t just mean financially. Although it does cost people financially too.

So, what does it cost a person to take part in your research? And what if the people who need your information, technology or service are the people who cannot ‘afford’ to take part?

Financial costs

If your research sessions are in person, what will it cost a participant to get there? There may be travel costs such as bus or train fares. Some organisations reimburse travel expenses for participants. But what if people do not have the spare income for an extra journey? What if they cannot afford to wait to be reimbursed?

If you pay for the tickets in advance, that would be one less cost for a participant. But what if public transport was not accessible? Could you find and pay for accessible transport?

And what if the participant needs assistance when they’re out and about? Many disabled people tell us that their social care package does not meet their needs. There is also a shortage of Personal Assistants (PA). If the participant has to use 3 hours of their PA time to attend your research, that is a cost. The participant now has less PA hours that week, which might mean missing out on daily support. The PA is not taking part in your research, but the disabled person is responsible for their travel expenses. So who will pay that cost?

Online research sessions are not free either. Scope’s cost of breathing campaign highlighted the extra costs disabled people are facing during the cost-of-living crisis. We hear from people who do not have gas and electricity. Talking part in online research will cost people in electricity. They’d also need a digital device and access to the internet. But disabled people are twice as likely not to use the internet because they:

• do not have digital skills
• cannot afford the technology or data to get online
• do not have the assistive technology they need to use the internet

So, what if people do not have the resources or skills they need to take part online?

Time

Ok so this is an obvious one, you are asking people for their time. But what is that time costing people and what would they have been doing instead?

Are you looking for people who can take part in sessions at a specific time? Or asking people when they are available and being flexible?

If people work, they may have taken time off to participate. This could cost them wages, annual leave or their lunch break.

You might be asking for time of other people and not know it. For example, if people have children or caring responsibilities. Participants may have had to ask somebody to help whilst they take part. And they may have to pay for that.

If the sessions are in person, incentives may not include travel time. But it will still cost participants that time. For example, the session is 1 hour and the journey is 1 hour each way. So taking part has cost the person 3 hours, but the incentive was for 1 hour.

Do participants need to do anything before taking part in the session? Emailing the researcher, filling out consent forms, reading information all cost time.

Accessibility and identity

People should be able to access your research sessions. The Equality Act (2010) says that disabled people have the right to reasonable adjustments that make jobs, education and services accessible to them. But checking if the research session is accessible for them will probably cost your participant.

People are individuals and what they need will be individual to them. So do not offer a list of adjustments you are willing to make or assume you know what adjustment a participant will need based on their condition. Because what will it cost them if the thing they need is not on the list and they have to ask for it? Or if the adjustment has made your research less accessible to them?

As a researcher, asking people if there are any ‘reasonable’ adjustments you can make is a start. But who decides what is reasonable? And are you only willing to make adjustments based on disability? As Karina Cotran wrote, ‘disability is a fraction of an identity’. So, what about the other fractions of participants’ identities?

Keah Brown said that intersecting identities, such as disability and race, can make people feel even more of an outsider. So the cost of not making adjustments to sessions based on other parts of a participant’s identity is that you could make them feel like an outsider.

We ask people if there are any changes we can make to a session so that they will be comfortable taking part. We don’t mind if they want that change because of their condition, or because of another part of their identity. We want people to be comfortable when they speak to us.

How many spoons does your research session cost?

Christine Miserandino wrote the Spoon Theory to describe how some disabled people have a set number of spoons to use each day. Each task throughout the day costs spoons. So people need to make choices and think consciously about how they use their spoons.

The way we design research may affect the number of spoons a person needs to take part. For example, travelling to an in-person event may cost more spoons than an online session.

For one person, an online focus group with other people may use more spoons than an interview with one researcher. But for somebody else, the online focus group may cost fewer spoons than the interview because the person is not expected to speak for the full session.

So how many spoons are you asking people to give you? And are you willing to ask for fewer spoons, by changing the way you run your sessions? It might mean that people can take part and have spoons left for their evening meal.

But even if you ask for fewer spoons, there might be extra costs for participants after the research session. For example, some people:

• will need recovery time after taking part
• may spend too many spoons and have to pay them back. This will leave them with fewer spoons for the next day, week or month.

And for some people, regardless of how many adjustments you make, taking part in your research will be too many spoons. And those spoons will have to be paid back.

Final thoughts

As researchers, we’re always grateful that people take part in our research sessions. Without them, we would not exist. When I started writing this blog, I wanted it to be a short follow-up. A short list of questions that could help us when planning research or collecting data. Instead, I’ve asked lots of questions. But they are worth considering because they all add up.

I always knew there was a personal cost to taking part in research. Sometimes you witness it. But when I started writing, I realised how expensive it could be. And how it can lead to research excluding people who cannot ‘afford’ to take part. This can reduce the diversity of participants and could mean that the people who need your information, technology or service the most are excluded.

There are other practical costs that I haven’t covered. And there are others that I haven’t even touched on, such as the emotional, psychological and social costs. All costs will vary depending on:

• who you are doing research with
• the topic you are researching
• the type of research session you are asking people to take part in

So here we are, many more words later than I had planned, with me asking again: do you really need more research?

If you do, can you offer flexibility in how you do research and collect data to reduce the cost? Because if people cannot ‘afford’ to take part, how can we listen to what they have to say?

Be user-centred and let people choose how they want to have their voices and stories heard. It will reduce the costs to participants and make research more inclusive.

But taking part in research will never be free! And as researchers, we set the cost of participation.

P.S. I acknowledge that there is a cost for researchers too. But this point deserved a post of its own.