The Importance of Expanding the Meaning (and Purpose) of Participant Consent
Why we need to recontextualize consent from a box-checking, transactional step to a way of building trust, establishing rapport, and expanding our research mission.
Informed consent is something that most researchers are used to navigating on some level. Often, we talk about it from a legal or business point of view. (In some countries, informed consent for user research is codified in publicly accessible service manuals).
From that standpoint, it doesn't take too much for participants to consent to participating in UX research. They may sign some terms of service for the research software you’re using, and you may obtain verbal consent at the beginning of an interview. Some more rigorous projects may have an informed consent document to sign, but the conversation often stops there.
Note: I'll be using the term "scouts" throughout this piece to describe participants, which is how we describe the community of folks who make dscout studies possible.
Additionally, you'll see the term "Mission," which we use to describe a host of research types, like a moderated interview or unmoderated study.
Consent is more than a transaction
The issue with all of these approaches to consent is that we’re thinking of it as something we, as researchers, have to obtain. Simply put, it's transactional. It’s a box to check before moving on to the real business of the day, which is gathering data from our participants.
This model is fundamentally extractive—it makes us consider permission as a one-time barrier to getting what we want, rather than a crucial part of the ongoing experience of getting to know our participants’ experiences.
In order to move away from an extractive model of research, we must consider consent to be an ongoing ethical and relational consideration in our processes—scouts/participants are people, after all. They deserve to know what they’re participating in and who their information will be shared with, as do we all.
This is especially true of research on sensitive or potentially traumatic topics, such as finances, healthcare, or housing. If we want to expect scouts to share some of their deepest insecurities or fears with us, we should be invested in making that experience as safe as possible for them.
Comprehensive consent practices are one way to move towards a more empowering model of the researcher <> participant relationship. In this article, I’ll outline some ways you can expand the consent conversation beyond a simple ‘accept mission’ button.
Last month, I ran a project researching scouts who take care of a loved one in need of extra assistance because of their age or health. The ‘caregivers’ project was a 5-part diary study over the course of a week. We asked scouts to:
- Show us their homes and how they’ve been set up to care for their loved ones
- Show us daily moments of caregiving
- Talk about the best and worst caregiving tasks they regularly do
- Discuss how the task of caregiving has changed their lives
As you can imagine, this topic brought up some weighty emotions. Because we knew this project was going to be very sensitive, we wanted to use all of dscout’s tools to make sure scouts were aware of what they were agreeing to and fully and enthusiastically consenting to participate. This included several elements:
Full context of informed consent
One of the key elements of “informed consent” is, of course, the “informed” part. It’s key to give scouts as much information up front as possible about what they’re getting involved with.
If there are reasons that the scout might not want to participate (e.g. too much time, too painful to talk about, etc.), it’s better for everyone for them to know it up-front. That way, you don’t get mid-study dropoff, and the scout doesn’t feel pressured to finish something they’re uncomfortable with just because they already sank time into it.
The more context you can give them for what you’re collecting without tipping your study, the better. Sharing why you're collecting can also play an important role in establishing a relationship of trust and camaraderie with your participants.
Sharing some context about what their information will be used to do can help pull back the curtain on the research process and make participants feel less like data mines and more like partners. Also, if they see the value in what they’re doing beyond their monetary reward, it may generate better buy-in (and therefore better data).
If you choose to use dscout, the platform gives you a few customization options for you to inform your scouts early about what they’re getting into.
Providing and overview gives scouts a high-level view of what they’ll be doing in their study. On dscout, you can use the customizable “Overview” field for this. Researchers on our team tend to include a few key pieces of information as a matter of course:
- What the study is about
- What it will be used for, broadly (e.g. product improvement, understanding the audience better, public display, etc.)
- An overview of the parts they’ll be asked to complete, with a brief description for each one
- Whether the mission is automatic or manual
- Who they can contact if they have questions
- Any additional information they need to get started
Here’s our caregivers' overview:
dscout also allows the customization of your invite message. This invite lands in their email and/or app it’s the first information your scout sees attached to your mission.
The default dscout message says: Lucky you! You've been invited to participate in a mission on dscout.
This doesn’t give a lot of information, and also for more sensitive topics, may strike a tone that you’re not intending. Here’s what I like to include in my messages:
- What the mission is called
- Why they were selected (what screener is affiliated with this study, and if possible, what criteria got them selected)
- The reward for the mission
- Any particular heads-ups they may want before reading more
- Instructions to read the overview carefully, and a timeline for next steps
Here’s my invitation message:
|Hi there! You’ve been invited to participate in our dscout diary mission, “Sharing about Caring.”|
We reviewed your entry to the “Care and Assistance” express mission. You told us all about an older relative who you help to care for, and we are really interested in hearing more! We would love for you to show us more about what it’s like being a caregiver for someone who lives in your home.
This is a 5-part diary mission that will take place over 10 days. Scouts who complete the mission will earn $100. Part 1 will have more information for you about the mission and what it will require of you.
If you’re interested in participating, please *accept the mission and complete part 1* by [DATE]. We hope you'll join us!
An informed consent part
The full scope of your project may not fit in an overview or an invite message. Traditionally, the step to take would be an informed consent form—formal, legally binding, etc.
But informed consent forms are difficult to handle, and they can be intimidating for participants! I’m not sure they’re worth pursuing, unless they’re a legal requirement at your organization, Fortunately, dscout’s flexible structure in Diary paves the way for a middle ground: the “informed consent” Part.
An Informed Consent Part (note: a ‘part’ on dscout refers to a research activity) is a way to kick off a mission with an extra checkpoint for scouts to read about the study and agree to it fully before beginning.
I personally use these parts as a more informal, conversational way to communicate the scope of the project and ensure that there is a clear understanding/trust between me and my participants. Scouts feel as if their time is being valued, they learn a bit about me (as a researcher), and it builds that trust—all of this is especially helpful for remote, unmoderated research.
Here’s how we framed ours in the caregiving study:
Within the part itself, you can write more details about your study, its requirements, and any potential costs or harms to your scouts. The additional information you may want to include might be:
- What will the data be used for? (In more detail than the overview)
- Who will see this data? (Will it be shared widely? Will it be public-facing? Will it stay in your team? etc.)
- Are there any particularly sensitive topics that will be asked of them?
Depending on the tone, you could even introduce yourself or your colleagues, just like you would in a moderated interview.
|Welcome to [your study name]! My name is [name] and I’m the principal researcher on this project. I wanted to use this part to introduce myself and tell you more about the project before we begin.|
Use the “checkpoint” style of question to break up your details into easily digestible chunks of writing. You can even make them into a close-ended questions to encourage scouts to engage and actively consent to each sub-point.
|In this project, you’re going to be asked to show us scenes within your home. We will ask you to show us moments of care-taking. This may involve organizing medical information or bills. |
None of your medical information will be shared outside our team, or used in any other way besides to inform future designs within our organization. Is this OK with you?
Consent to “be in a study” is sort of vague, when you think about it. On the back-end, we know this can mean a lot of different things for scouts. Sometimes, we may just be compiling numbers from close-ended questions into a fully anonymous report.
But other times, we may be showing a vulnerable or emotional video to a wide range of stakeholders. Scouts that are comfortable with the former may not all be comfortable with the latter.
Giving granular consent options for what kinds of data scouts are willing to share is a good way to account for this. Granular consent can empower the scout and build trust with your team.
It’s also good for your data: scouts who might have otherwise held back in their videos might be more honest if they feel confident it’s not going to be directly shared, and still give you permission to use the quote as a verbatim. You may also retain some participants with limited comfortability that you might have lost otherwise.
We opened our informed consent piece with the following question, which introduced how we would be using the data and asked for granular consent for different types of data to be shared.
We decided that if scouts weren’t comfortable with anonymized descriptive summaries, then they wouldn’t be a good fit for this research; all the others were workable for our team. Fortunately, 15/15 of our completed scouts consented for verbatims to be shared. 9/15 consented to photos and videos.
Because this is an in-platform question, we had these consent data built into our system; any time we wanted to find a video for a deliverable, for example, we could filter to people who gave consent and select from those.
We also decided to transfer this information to scout groups, so that the information would be visible when reading individual entries, as shown below:
This made it easy to look through our data and pull quotes and videos only from those who consented.
Consent of others involved
dscout is all about looking at folks and their experiences in the context of their everyday lives. But it’s important to remember that ‘context’ involves other people. And while our scout may feel very comfortable sharing their personal lives, others involved may not.
If there are other people who you suspect will be documented in the course of your study (e.g. spouses, children, friends, etc.), you can always ask a question encouraging scouts to have a discussion with those folks before they begin.
Here’s what I did…
Of course, this is no guarantee that they’ll follow these instructions, and it certainly isn’t legally binding for either party. Nevertheless, we still felt it important to acknowledge that we were involving others besides our scouts, and we inspired some productive conversations between scout and researcher.
Communication with scouts during the fieldwork is critical and here is no exception. I have the ability as a researcher to message scouts about specific submitted moments, which I might do if I am unsure about the consent of a person involved in a moment. This way, I can address consent issues even after a participant completes an activity.
Ability to revoke
Consent is an ongoing process. Informed consent rules get this wrong, in my opinion. It’s very formal; signed-sealed-delivered. Good for legal, but not representative of the actual experience of sharing vulnerable information.
Also, leaving consent flexible can actually result in more data. Someone who was unsure about the study at the beginning may end up feeling more comfortable than they thought they would, and give you permission to use more of their data than they did at the start. (This actually happened in our study - one person obtained consent from their loved one mid-way through the study and was able to document more than they thought!)
You can use dscout in a bunch of ways to make consent an ongoing process.
If you make an informed consent into a formal part in your study, then updating consent is easy. If scouts change their minds about what they’re willing to share, they can return to the part and submit a new entry noting their updated comfort level. When it comes time to build deliverables, just pay attention to the most recent consent entry that was submitted.
You can also use the comment feature for consent purposes. If there’s a particular moment that you want to share with a wide audience that seems potentially vulnerable, you can use the comment feature to ask permission for that particular part.
|Hey there [scout name]! This entry really spoke to us, and it represents a situation we saw with many of our other participants. Would it be alright with you if we included this video in a presentation to our co-workers?|
You can also encourage scouts to use the comments feature if there’s something in a specific entry that they’re not comfortable with sharing. This lets them opt out of having particularly sensitive verbatims shared widely, even if they gave consent for verbatim sharing in the rest of the study.
Lastly, you can use in-app messaging to remind people of all these options, and to keep the door open at any time for them to reach out to you with questions or concerns.
Be aware that the more freedom you give people to opt out, the more likely they are to do so. This is a good thing! It means that people who are participating really understand what they’re getting into and want to help.
For example, we had one participant drop out because their relative ended up too embarrassed about their health condition to engage with the mission. They had initially given consent, but then changed their mind, and so our participant pulled out of the study entirely out of respect for their relationship.
I love that that happened. I also acknowledge that it might not have happened otherwise—if we hadn’t requested that all participants talk to their relatives, it’s possible that this scout might have completed the mission without their relative’s consent or even knowledge.
I would have had more data, sure. But given this relative’s reaction to being documented, I am not comfortable with the implied ethical cost of that data.
In order to account for this, we have to be prepared for a potentially higher attrition rate than we’re accustomed to and recruit accordingly. We experienced a 20% dropoff in this study, but we were prepared with backups in case the drop off was higher.
But then we get responses like this, which was sent at the conclusion of the study:
"Thank you for the opportunity to share my information with you and I enjoyed it. I am sorry my grandmother wasn't feeling up to videos but I made it through."
"I’m very grateful to have been able to participate in this mission. Please reach out if you have any questions!"
"I know I was hesitant at first, but I'm glad that I went through with the mission. It wasn't particularly easy to talk about my role as a caregiver, but it was kind of therapeutic. Thank you for being flexible."
I think as a researcher, this is one of the things that marks success in a project and prioritizing consent—in all the ways I've described here—is an important way to create it.
Karen is a researcher at dscout. She has a master’s degree in linguistics and loves learning about how people communicate with each other. Her specialty is in gender representation in children’s media, and she’ll talk your ear off about Disney Princesses if given half the chance.
Subscribe To People Nerds
A weekly roundup of interviews, pro tips and original research designed for people who are interested in people