Ep#32: Informed Consent: The Ethical Backbone of Design Research

Dr Dani: 0:07

Welcome to the Design Thinker podcast, where we explore the theory and practice of design, hosted by me, dani, and.

Designer Peter: 0:16

The Peter.

Dr Dani: 0:20

Hey Pete.

Designer Peter: 0:21

Hi Dani, how are you today? Good, how are you? I'm very well. Thank you, it's good to be talking to you again, as always.

Dr Dani: 0:38

As always. What are we talking about today? Today, we are going to talk about informed consent Sounds fancy and serious, doesn't it? It is serious, but I think also as design thinkers, informed consent is a topic that we should be very passionate about.

Designer Peter: 0:49

Yes.

Dr Dani: 0:49

I guess maybe we could. We usually start with a definition, but what I'm curious about is so, when you hear informed consent, like what comes to mind for you Because you had I'm curious because you said it sounds serious.

Designer Peter: 1:05

It's serious because it's important, and I think there are, for me anyway, within design thinking. There are a need to be playful at times, and for me, playful can include testing the boundaries of things and exploring, being kind of divergent in our thinking and actions and generative Perhaps at the other end of the spectrum in our work, and one of the reasons I like it is it's full of or crosses the spectrum from art to science, logic to emotion, et cetera. I think informed consent is one of those things that's probably at the towards the opposite end of the spectrum to being playful and explorative. Yeah, and that's what. That's what. That's why I thought I think of it as something to take seriously and be serious about that makes sense?

Dr Dani: 1:57

yep, that does. When you think about informed consent in the context of design where what do you think about that?

Designer Peter: 2:07

so I think initially think about the people outside of the organization we're working for, but and those people essentially need to be fully aware of what they are taking part in, whatever element of a piece of design work they are taking part in, like whether it's research right at the beginning of something or whether it's, um you know, testing towards the end of something, and maybe even, you know, as a somebody who is experiencing the first few versions of a product or service, then they should be aware of that. I don't think, as a principle, we should be unaware beta testers although I think we are that almost all the time in our lives For example, testing their different versions of their website.

Dr Dani: 2:54

Part of the challenge is there's different levels of informed consent. But I think, before we get into talking about that, I think we need to go back in time and understand why we have informed consent in the first place. Informed consent came about because some people did some really dodgy things that harmed people, okay, um. So you may have heard of things like the taka cg experiments I may have done, but the taka cg experiments yeah, do you know what I'm talking about?

Designer Peter: 3:25

no, maybe I do, but maybe I've. I've not heard them call that before or I'm not hearing the words you're saying properly oh, this might be an accent thing. Tell us we experience that, don't we our accents? But yeah, I mean, you can't hint at a story with me and not kind of actually tell me the story.

Dr Dani: 3:46

So the Taika Siji experiment was? It was a study on syphilis in the US.

Designer Peter: 3:54

OK.

Dr Dani: 3:55

Where they ran a bunch of experiments on the treatment of syphilis.

Designer Peter: 4:00

OK.

Dr Dani: 4:00

The study was done in the African-ican or black community in the us without people really being told what was happening to them. So they were experimenting with syphilis, but without really informing people what they you know what they were getting, why they were getting it, all of those kinds of things okay. And there's other things that have happened, but the takashiji experiments is one like when I went through my ethics training in my phd program and my master's program.

Dr Dani: 4:30

That's kind of one of the key ones that we talk about because, it helps to demonstrate why we need to do informed consent yeah, okay, yes, I have heard of heard of this informed consent came about because there were lots of experiments done at a point in time where people were not told one that they were part of an experiment.

Dr Dani: 4:57

People were not told of the risks and benefits of the experiment and they weren't given the choice of participating or not. At a very high level. What informed consent is about is giving you the awareness of what we're looking to do. So we're looking to study the effects of this vaccine on treating syphilis. We're looking to study how people want their cereal packaged. We're looking to study how we can improve customer experience at a call center. It's being very clear about what we're looking to understand, and then risks and benefits and then giving you the choice if you want to be part of this or not.

Dr Dani: 5:42

If you want to be part of this or not. And the reason I gave you those three examples is I think oftentimes and I have this battle a lot when I go into organizations to do discovery work oh well, do we have to do informed consent? Because informed consent is seen as like oh, but we're not doing like scientific research, we're not doing academic research, we're not doing medical research. So it doesn't apply, but it does the scale at which you do it.

Dr Dani: 6:10

The formality of how you do it varies, then on the type of research that you're doing and discovery work is a type of research, but anytime you're going out there and you're talking to people to get information from them and then you're going to use that information in some way, informed consent applies yes, that that sounds, uh, it makes sense to me.

Designer Peter: 6:35

Uh, is there from a you know? For I guess from my own kind of standard, I would guess, to describe or describe it as, or from my own kind of standard, I would guess describe it as, or from my own, I guess, ethical standpoint, it makes sense to let people know why you want to talk to them, if you're doing research, or why you want them to try something out, if you're helping them test a prototype or getting them out there to test a prototype. Maybe it's going too deep, too soon, but from a legal point of view vary from country to country, so maybe we can. Are we talking about legal obligations here? Are we talking about ethical obligations? Told you we were going to go deep.

Dr Dani: 7:12

Well, let's just get into it right, yeah, let's get into it. Informed consent can cross the lines between legality and ethics.

Designer Peter: 7:19

Yeah.

Dr Dani: 7:28

Informed consent from a research perspective is a ethical requirement, not necessarily a legal requirement, unless you are doing medical trial type research, right? So the type of, so the type of research that we do as design thinkers is, falls more in the social science spectrum. It's generally what we call a low risk research, so this is more about an ethical obligation. However, with things like privacy law coming, becoming more prevalent, yeah we have now this is becoming. This touches on a legal requirement, as well.

Dr Dani: 8:02

Privacy law requires that when we collect data about somebody, we inform them that we're collecting them. We get their permission to collect them. We tell them what we're doing with it, how it's stored and how it's going to be used. That part is also covered in informed consent. So this is where this is starting to now blend into ethics and legalities.

Designer Peter: 8:23

Yeah, yeah, not surprising that kind of jumped forward and jumped around a little bit, where this is starting to now blend into ethics and legalities. Yeah, yeah, not surprising that kind of jumped forward and jumped around a little bit. Should we maybe just take a little step back and land on what is the definition of informed consent? And it's like, specifically informed? I don't think we need to go into the etymology of the two words, but what do we mean by informed consent? And maybe, as we're narrowing our kind of conversation, it's what we're talking about here is not informed consent for, say, a medical procedure or taking part in a in some sort of experiment, but it's more, um, yeah, informed consent in research and design research.

Dr Dani: 9:05

Yeah, so I just Googled a Googling moment here, yeah, and the first definition that came up is permission granted in full knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment, with knowledge of the possibility of risk and benefits okay, I like the uh the first part full knowledge of the potential consequences okay um here's another one. Informed consent is the process of exchanging information so that a consumer can make an informed decision about their participation. Yeah, nice.

Designer Peter: 9:48

Okay, here's another one. So this is from the Oxford University website and this is from the research support pages of that website. This is a bit of a goldmine that I've stumbled across. Could be useful for all sorts of things, but it says what is informed consent. Informed consent is one of the founding principles of research ethics. Its intent is that human participants can enter research freely, brackets, voluntarily, with full information about what it means for them to take part, and that they give consent, bold, before they enter the research. And then again the next sentence start. Next paragraph starts consent should be obtained. Bold, before the participant enters the research suspect.

Dr Dani: 10:35

There's some history behind that bolding of the word before yes informed consent has to happen before, and there is a history of there have been practices where people were told they were part of an experiment after. The idea is, if something has happened and you're informed about it after the fact, then you're not really giving consent right because it's already happened. So before is absolutely critical and the before like a good practice for before. I like to do it as the before as as before as I possibly can. So let's say that we're booking in interviews with with customers. A really good practice is to send your written informed consent to them ahead of time. So you're, you're meeting them on wednesday, maybe you send the informed consent on Friday, give them time to review it At the interview. You still talk about it, but it gives them a chance to look at it, think about it, talk to other people about it, those types of things, so that you're not making people decide on the spot.

Designer Peter: 11:45

Yeah, nice. Yeah, because people on the spot can feel pressured into making a decision that they wouldn't make if they had a bit more time to think about it. Yeah, okay.

Dr Dani: 12:00

We have a bit of a definition of informed consent. The other thing, you know, when you look at these definitions, one thing we have to call out is the other thing that informed consent does is it helps level the power dynamic. Often, when you are the researcher or the person doing the discovery work, the people that are participating in that work, they don't have as much information as you do. And what informed consent does is it helps level that power and balance of knowledge. Yeah, because now I am sharing with you the purpose of what we're doing, why we're doing it, how we're going to use the information you're giving us, how we're going to keep it safe, all of those things.

Designer Peter: 12:46

Yes, I do like that and I think, because I think one of the great, I guess one of the things that design thinking enables is an awareness of, and even a temporary almost leveling of power dynamics.

Designer Peter: 13:00

You know, if you have a cross-functional team in an organization and then extending that thinking beyond the organization to you know the people you are designing for your customers or users, does make me think and this is going to be a bit of a bouncing around conversation, I think, but the and this might answer some of the question around why, you know, sometimes informed consent might be deprioritised or maybe even ignored. Informed consent might be deprioritized or maybe even ignored. And that's because maybe I'll frame the question as how might we have informed consent whilst doing our best to avoid, I'll call it, the Hawthorne effect? So you know, by telling people that they're part of research and explaining what the purpose of that research is, then we will, I'm going to say we will undoubtedly skew the research itself and the outcomes of, or the, the results of, that research. What do you, what do you think of that?

Dr Dani: 13:47

absolutely it does. We know that when people know they're being studied, they behave differently, but that also happened. I think that happens whether you do informed consent or not. Like if you just start asking somebody questions, they're probably going to tell you things a little bit differently than how they do it. And this is also why, like good research, we speak to a multitude of different people different perspectives, different environments and we try to find themes, we try to synthesize, we try to triangulate information. So this is what we heard in interviews, but this is what we've seen in other research. Do they align, do they contradict each other? If so, why?

Dr Dani: 14:27

So it's not just about we're going to go do some things and then take that as gospel. So there's all these other ways that we can minimize the Hawthorne effect or the effects of the Hawthorne effect. Yeah, but that's just a risk. And so, like when I was going through my PhD program and my master's program and learning how to do research, one of the things that you know, you're taught very early on is there's no research is perfect. Every research paper, project that you read there is a flaw, and it's flawed because we are humans researching humans and by nature, we're biased or flawed. So the researcher is biased and flawed.

Dr Dani: 15:07

The research participants are biased and flawed yeah and the best that we can do is understand the biases and try to minimize yeah, great, I like that and so yeah what we're saying is there's.

Designer Peter: 15:23

That's no excuse for um just because we know that by telling people what we're doing, it will change the research. That's no excuse for not seeking informed consent.

Dr Dani: 15:36

And this comes to another principle in research ethics that the benefits have to outweigh the harm. Yeah, OK the benefits have to outweigh the harm. Yeah, okay, and the reason that we say we always do informed consent, even though we know that people having all of this knowledge about the research might skew how the information they give us.

Designer Peter: 15:55

The harm of not doing it is greater than the benefit the definitions of and the scope for what is a benefit and what is farm it's. It's definitely something to pause on as a, as a design team or as a as an organization to go right. So what is it we're going to get? What is it we're hoping to do for these people? You know what are we getting in return for that and you know, is this change, um, or new thing that we're about to try out when we're getting to the prototyping and early adoption stages? What's the potential harm that it might cause? And it might not be immediate harm. It could be some chain of events that results in an unintended consequence. Maybe that's a whole other episode coming back to inform.

Designer Peter: 16:37

Coming back to informed consent, so yeah, we've talked about the uh, we've talked about the definition, danny, we've talked about the, the why. Why is kind of tricky, because, well, let's just say there's no choice, you just need to have informed consent and all. So maybe we move into the. How do we? How do we do that? How do we? How do we include this in our design approach? And is it a one-time thing or is it an ongoing thing? What tips have you got there?

Dr Dani: 17:01

like with everything else we talk about, context is important. A lot of design research that we do is what I would call it's low risk, right. So the informed consent that we have to do is on the minimal side, whereas like if we were running experiments on people or we were doing like biomedical research, that would be much more high risk and require a completely different level of informed consent. So we have to kind of keep that context in mind. One define what level of information are we asking people. Is it literally we're asking them about products and services and how they use them? Are we asking them to share deep, dark family secrets? Are we asking them to share their medical history, family secrets? Are we asking them to share their medical history? What are we asking them and what's the sensitivity of that information we're asking them? We have to define that and then you have to really think about is there another way for us to get the information that we need? So I'll give you an example Some years ago I did some research when I worked in banking, because we were trying to figure out how do we put in the right kind of services to help customers who are going through financial hardship so that they felt comfortable talking to their bank early, because the sooner that they reach out to the bank and go look, I think I might be in a little bit of trouble.

Dr Dani: 18:26

What are my options? The more options you had, but what we were finding is that people were literally waiting till there were no options. So we were trying to understand how do we do this? How do we create the service, the support, the care so that people feel comfortable coming to the bank and going? I need some help Now. We knew that to do that we had to go talk to people that have faced financial hardship within the last year or so.

Designer Peter: 18:51

Mm-hmm.

Dr Dani: 18:53

And the critical question we have to ask there is are we asking people like are we re-traumatizing people in doing this? Is there another way, and how might we do this so that we minimize any traumatic feelings that we might bring up? You know, we don't want to re-traumatize people, so we did that work, come to the conclusion that understanding these personal stories would also help other people so they can see oh, somebody else like me did this and and this was the outcome. So having those stories we realized was pretty important. So then we designed the informed consent process and it was very simple. It was literally we everything I just said.

Dr Dani: 19:37

Look, we know that when you experience a financial hardship, many customers don't feel comfortable reaching out to their bank and many customers aren't even aware that there are ways that your bank can help you and we're trying to understand what could we do better to help in those situations. And then we said we're reaching out to you because we know that you've gone through this similar experience like this. We told them how we know and then we went into what you know. We'd love to have a conversation with you. It'll take about 45 minutes to an hour. And we went through. You know we'll be asking you these types of questions. We don't say the exact questions, but these types of questions. And then we talked about risks and harm and we said, look, we understand that talking about this stuff might be really triggering for you, and being part of this research is voluntary. You don't have to say, yes, being part of this research is voluntary, you don't have to say yes, saying no doesn't impact any of your banking services or products.

Dr Dani: 20:45

And then we talked about participating in this research. Here are the benefits we envisioned. You know, we'll be able to create things that help other people that were in your situation, but also wording that in a way that doesn't seem like we're guilt tripping them into doing this.

Designer Peter: 20:57

Yeah, yeah, yeah yeah.

Dr Dani: 20:59

And making it very, very clear that it's voluntary. They don't have to participate and not participating won't impact any agreements they have with the bank.

Designer Peter: 21:08

Yeah, yeah, yeah, wow, yeah, ok, I mean that sounds like a really good model to copy. There's lots and lots in there and it's almost as you were introducing that I was thinking, well, what about this, what about that? And you, you've covered a lot of that off like, um, uh, yeah, for for a bank, especially a bank and a customer, there's a. There is a particularly heavily skewed um, for for the majority of people, heavily skewed relationship where you know the bank has my money and the bank is in control of any, you know, credit or loans, or being able to buy a house, for example. So you know, a lot of people believe that they have to stay on the right side of the bank and in the old days it would have been the bank manager.

Designer Peter: 21:52

So that could easily lead people to believe that soft invitation is actually a kind of hard instruction in disguise. So, taking great care to emphasize that as much as possible. Like you said, no research is perfect and no kind of communication is perfect, so there's always going to be room for misinterpretation. But, yeah, there's a tricky or going through that invitation to take part in research and the informed consent needs to really be thought about carefully, doesn't it? To make sure that it is. Of course you want to encourage people to take part in the research. Otherwise you won't be able to help them and design something that makes a difference to their lives. But at the same time, you want to, you can't manipulate them to take part, and this is the part what you're touching on is.

Dr Dani: 22:44

Earlier I mentioned the power dynamic.

Designer Peter: 22:46

Yeah, yeah.

Dr Dani: 22:47

So if you are a bank, you're in a position of power and if you're going to these customers, particularly the ones that have experienced hardship, they are going to feel that you hold the power as the bank. But that happens in lots of other situations, right, like if you're a government agency doing research. People might feel like, oh my God, I've got to do this. So you've got to really be mindful about what is the social perception of the organization that's going out and doing the research or the opposite.

Designer Peter: 23:18

I guess it's perhaps less to do with informed consent and more to do with, you know, doing, uh, good um, research, including different groups of people. Some people may actively resist giving information, taking part in a research project from a bank, for example, or a government agency, because at a bank or a government agency, whereas you know, as as designers, you know, we have a duty, I think, to speak to people from. I guess, in a commercial sense, speak to people who are not your customers as well as people who are your customers will give you a good, a better set of information and give result in better research than if you just speak to your number one fans.

Dr Dani: 23:57

Yeah, and this is also where context is important. In another example, actually, when a bank was looking to look at upgrading it was like the 2.0 of their banking app they went out and not just talked to their customers that were using the app, but they talked to other customers that were using a different bank's app. So in that context that matters. In the other example of hardship that I just gave you, we didn't go talk to customers of other banks One because there was really no undodgy way that we could figure out who the customers that experience hardship were. There was a little bit of how do we do that and it didn't feel appropriate. When somebody's been through a very traumatic experience, if we didn't already have a relationship with them, we shouldn't be going and talking to them now. From a design research perspective, it would have been really cool to understand what are other banks doing, what are the experiences of other customers, but in that context that wasn't appropriate good.

Designer Peter: 25:01

There's a couple of good stories there. What what I mean? And it makes me think it's getting into the actual kind of concrete, practical, how. So I think in that story about reaching out to, to bank customers who'd been through hardship, it sounds like you were sending them something, possibly an email or a letter or something in writing, and then do they have to? What does good informed consent look like?

Dr Dani: 25:23

Again, context is important.

Designer Peter: 25:25

Yeah, okay.

Dr Dani: 25:26

So in the example of that, what we did is we actually had the person that they worked with when they went through the hardship, like the bank employee that they worked with. Call them Okay and say, hey, remember me bank employee that they worked with call them Okay.

Dr Dani: 25:38

And say, hey, remember me, this is what we're looking to do. And you know, we kind of gave them some talking points and then we had a very simple document, very simple, as simple as we could make it linguistically laid out and we sent that to them and said you know, have a read of this, let us know what questions you have. And that's how we did that. So I am a proponent of doing both, but again, the context matters, right? So if you work for, let's say, a retail organization and you're trying to find some customers you want to go talk to, it might start with an email and go hey, we know that you're a valued customer and we're doing XYZ to understand XYZ, we're wondering if you might want to participate in a blah, blah, blah. And in that context, and you know, starting with an email seems appropriate because broad audience chances are that you're not going to be talking about anything where you're requiring people to relive trauma or share deep, dark secrets or, you know, just like really private personal information.

Dr Dani: 26:59

The way that you reach out can vary, but I recommend as a general practice, whether you do it verbally, with a phone call or in person, that you follow up with something in writing and the something in writing. The reason that you want to do that is that we have very short memories and you want people to walk away and remember and be able to recall and come back to things, so you always just a good general practice is give them something in writing. It's also a trust thing when you put something in writing, like it helps build your credibility around what you're doing. We always we all know that cliche about like you know, don't believe it unless you know it's in writing, or that's just a principle that we're taught. If it's not in writing, it's no good. Yeah, and when you do that it helps build the trust, the credibility, like, okay, you're actually going to follow through with what you're going to see what you're saying, you're doing yeah, what about, so you know, having something in writing?

Designer Peter: 27:52

yeah, I think that's having something that people who are taking part in this can go back, go back to and kind of go. You know what is this thing again, or I'm not sure I feel comfortable about this anymore. Let me just remind myself what it is that I'm taking part in or participating in. What about, you know, signing something? Is that important?

Dr Dani: 28:12

So I'll talk about two things. One you could also do a video. Talk about two things. One you could also do a video there's been some communities that I've done research in, yeah, where I've done a video, and then they'd be like the oh my god, what do you call it?

Designer Peter: 28:22

the text that comes along the video um, yeah, the text that comes, that's right yeah, so it's me video speaking with letters that people could read to.

Dr Dani: 28:35

I also recently did a piece of work where we were doing some research in the deaf community.

Dr Dani: 28:41

And we had our informed consent translated to sign language, the video format that we can send to the deaf community ahead of time. So again, this comes back to context. Right, you've got to make sure that your informed consent is appropriate for the audience. So we used a lot of icons and emojis. So you have to kind of think about who you're going to go research with and what is what is appropriate. Um, when I do informed consent, if it's a community, I really hadn't done a whole lot of research in the deaf community, so I had to go and get some advice for people that understand the deaf community, like what is the best way to do it? What is the most appropriate way to do this, right? So sometimes, sometimes you might have to do that because you don't know and that it's okay to not know. Yeah, it's not.

Designer Peter: 29:53

It's not okay to assume you know yes and not okay to um ignore, just because it gets more difficult than the so-called uh norm or what you've done before, definitely it's for. Yeah, I mean these kind of the context and the situation for me is always, uh, it's kind of a fueling thing because if it's different to what I've done before, then I need to think about it and maybe get creative around how I, you know, it's almost like a mini design challenge in itself, like how do you uh solve some of these problems? The word accessible is coming into my mind. You're like when we're informed consent needs to be done in a way that's accessible oh, I will touch on this because I've seen this happen.

Dr Dani: 30:29

So organizations will want to go and do research about accessibility but none of the approach for their research process is accessible. So I can't say I'm going to go do research in the blind community because I'm trying to understand accessibility for my product or service, but then I send them a highly visual PowerPoint pack on informed control.

Designer Peter: 30:55

Yeah, situations to learn from and be avoided, okay. So, um, here's a question around that's coming to mind for me, around, you know, intercept interviews, so where we're maybe at the early stages of a, of a design project, um, you know, I like to do our super quick kind of sprint type activity that helps us set off in a particular direction, a more, let's say, informative direction. What about intercept interviews? So, you know, we've got a question or set of questions. We just interested in other people's point of view on that question and let's say, you know, we're working in a retail environment and we just like to know something from our customers and the customers who are in our store right now. What ways can we? That's the context. So what tips have you got for getting informed consent in those? We just want to walk up to people and start asking them questions about their experience of our store and our products and what they're using them for.

Dr Dani: 31:55

So can I just ask you just instinctually, what would you do if you were in a store? You've got a list of questions, Hi Dani.

Designer Peter: 32:02

Thanks for coming to our store today. I wonder if you've got a couple of moments for us to ask you about your experience here and how that's going for you. We're just doing some research into making things better for you. We're not going to use this research for this is where I'm starting to to lose my improvised speech, but some, yeah, a lot of this is really intuitive as well.

Dr Dani: 32:23

Right, you get people come up to me, you introduce yourself and then, so what I? The way that I would recommend doing that is you know, I would go hey, peter, um, I'm so, and so from from this big, beautiful store. Part of my job is to talk to customers to understand how their experience is going. We use this information so that we can make things better for our customers, and I'm just wondering if you have a few minutes to answer some questions. That I have To be really explicit and you know I'm wondering if you have a few minutes to answer some questions. Yeah, is that okay? Yeah, and if you could fit in, they're totally fine if you're busy and you can't, but it'd be really great if you could give me a few minutes.

Designer Peter: 33:06

Yeah, yeah, nice, that's the sort of thing I've done, that done up to now.

Dr Dani: 33:09

Yeah so informed consent doesn't have to be 16 pages of language that nobody you know. You need a freaking interpreter and like four phds to understand it can be. It's literally just going. Here is what we're doing, here's why we're doing it, here's what we're going to do with the information you share and then be explicitly asking now this part is important you have to ask and wait for them to say yes or no yeah, yeah, yeah, that is the consent bit.

Designer Peter: 33:42

We are providing the information for them to be informed.

Dr Dani: 33:45

They need, in return, need to give us their consent, and before, like not after, but before I wonder if it would be useful for us to talk about topics that need to be covered in informed consent.

Designer Peter: 33:59

Yeah, definitely.

Dr Dani: 34:00

So you'll notice that you know in your introduction and when I play that back to you, it starts with I am from XYZ, right, because people need to know who are you first of all, what's your role in this and who are you doing this work for. And then the purpose of why are we doing this? We want to improve customer experience. And then so, introducing yourself and who you're affiliated with, the purpose of what you're doing, why you've been selected. So, like in your example, your customer here. You kind of just slid that in right. So it's very clear we're talking to you because your customer here. And then what we call study procedure, which is literally all you said is I've got some questions I'd like to ask you that's your study procedure. It could be hey, I've got this real quick survey that I'd like you to complete. Whatever it is, you just state the thing you're asking them to do. It could be hey, we're testing a new app. Would you have a few minutes to do some tasks on this app for me? Then risks and benefits. So in your example, it was really quick, right, we're doing this to help make things better. In this example, you kind of listed the benefits because likely, it's very low risk, mm-hmm.

Dr Dani: 35:14

In the banking example with hardship. We acknowledge that. We acknowledge hey, this could be triggering for you because it made sense in that context, but it doesn't really make sense in the context of the store. So, risks, benefits. Then how you're going to use this, the information that you've been given. We're going to use this to understand how we can improve customer experience. We're going to use this to understand how we can improve customer experience. We're going to use this to understand what could we do to support customers in hardship better. Whatever it is. Then making sure that people understand it's voluntary, you don't have to, it's okay if you don't. And then, depending on, like in the store example, you can say totally understand if you don't have time right now. But in the banking example we needed to be more explicit this is voluntary, it won't impact any of the products and services or agreements you have with the bank. So this is where context is important and awareness of the context is important.

Dr Dani: 36:12

The other thing is confidentiality. So in the store example, you probably don't have to cover that off because it's probably obvious that you're not going to collect their name or anything. In the banking example we told people look what you share with me. So it was me and one other person going out and talking to these customers and we said to them the only people that will know that you specifically said these things are the two of us. When we share this back to the other teams, it'll be anonymized, it won't be so. We'll share what you said, but not that you said it. So, being clear about confidentiality, again, the depth of detail that you go into about that depends on the context.

Dr Dani: 37:05

The other part is compensation. When we ask people to participate in research, particularly as an organization, particularly as a for-profit organization, we should be giving something back. I've asked you to give me an hour of your time, so I should give you something because you give it. Your time is valuable, your insights are valuable and, honestly, without your knowledge and insight, I'm not going to have anything. The value of that thing depends on context. Again, again, if it's a five minute conversation, maybe it's a five dollar voucher. It's an hour conversation, maybe it's a hundred dollar voucher. Whatever you're you're as an organization you decide is appropriate. But it's very clear to be we're not paying you for this, but as a thank you. We're giving you this, or you know, as a thank you, we're giving you this or you know, as a thank you for your time, and in the store example it might be. You know, people say we know you're really busy but as a thank you if you could give me five minutes of your time, you'll get a voucher, kind of thing right.

Dr Dani: 38:10

And the final thing is contact info. Part of why the written part that I talked about earlier is important is good. Informed consent means that somebody has a way of getting in touch with you if they need to, if they have questions. You know, whatever the case may be. And it's also transparency, like who was that girl that came around that asked me all those questions? Oh yeah, so and so, again, the degree to which you do this context is important. So if you are out in the stores, it might just be that you give people your business card and say, hey, if you think of anything or you need to get in touch with me later here's my contact info, or it could be a general email box, whatever.

Dr Dani: 38:54

Yeah, is context appropriate, but giving them some way of the other thing I will mention when you do discovery work, this type of research in the banking context, in the heart, you know, people are telling us their hardship stories and we realize, oh my god, this person, this has triggered them, they're having an emotional reaction. You have a responsibility, a duty of care there to make sure that you know you can't just leave somebody crying in a puddle. Right, you have to um, and then you have to make sure that one in the immediate moment, get them to a place of okay, yeah, yeah and then you have a duty of care.

Dr Dani: 39:42

So it might be like when we went out and did that research, we had a list of services that we could refer people to and then I wouldn't really let them leave until I felt like, okay, they've composed themselves, that they recovered, they're okay. You know, maybe it was like, okay, why don't we go have a coffee? Why don't I get a tea, like whatever it is you've got to and acknowledge that. Oh, my god, I I appreciate you sharing all this. I can see that this has really been triggering for you, yeah, and and kind of move into that. So I I mentioned that because I think sometimes you get into thinking, well, that's really not my job, but it is yeah, yeah, yeah and it's like the human-centered thing to do, right yeah, definitely, you know it's from a.

Designer Peter: 40:26

Again, ethically, no matter what your kind of personal inclination is, I think you are obliged to provide that duty of care and, um, at some point the research just kind of goes out the window and what you don't have, what you have in front of you, is not a research subject but a fellow human being and, yeah, you are the person that is responsible for looking after that person.

Designer Peter: 40:50

And maybe, slightly less seriously, even if you're not in that kind of reliving trauma and you've opened the wound up again, and that person needs your time and attention and compassion.

Designer Peter: 41:02

And and in a less serious situation, sometimes you might come across a situation where a customer is pissed off and there's been an unresolved situation, a complaint that just hasn't been fixed in a particular in a good way. So I always think, always be armed with okay, I'm gonna I know we haven't talked about this, but I need to take your details now and I need to be able to get back to you, because I'm going to go back to our office and I'm going to connect the person who can fix this for you with you so that you can then yes, you know it's like closing and then then you I think this is my personal perspective you as the researcher have a duty of care and obligation to both and the person you're speaking to and the organisation you're working for, to make sure that that complaint is resolved. That is, in the moment, closing the situation that you need to. Again, the research kind of takes a back seat for me in those situations. Usually research insight, a story in itself to bring back into your discovery.

Dr Dani: 41:59

Absolutely. And you know know one of the things that I do like when I when I train people to do discovery work, but I teach them. When you go out and you talk to people, you have no idea what you're going to learn, what people are going to say, which is really exciting and cool and also petrifying. Yeah, and you can't prepare for every situation, but you do like. So you need to have a few things. Like, if somebody has an emotional reaction, these are some things I can do. If somebody needs some support beyond what I can do in the moment, here are some things I can refer them to. If somebody is really pissed off about something, here is how I will handle that, like you kind of planning for those things.

Designer Peter: 42:44

Yeah.

Dr Dani: 42:45

And having a plan for those things, because you don't know, and you know, there's been times where I've gone out and I've done this research and something's come up and I had I didn't have a plan for it and I said, wow, I appreciate you sharing this. I'm not even sure. Wow, I appreciate you sharing this. I'm not even sure. Like, this is not the scenario I was expecting, but I really appreciate you sharing it. I'm not sure what to do next, but what I will do is I'm going to give you my contact information, I'll take your contact information and I'm going to go figure out what to do.

Designer Peter: 43:15

Yeah.

Dr Dani: 43:16

And people are really appreciative of that. And then what I do is immediately later that day, I will send a note to say thank you. Here's what I've done. I don't have an estimated timeframe, but I will just send you an email in a few days to let you know. Let you know so that people really feel like you know, and that's how you build those human connections with the people that you're trying to make their lives better.

Designer Peter: 43:48

Yeah, yeah, absolutely.

Dr Dani: 43:50

Also, if you are in one of those scenarios where somebody has an emotional reaction, that following up is really, really, really important yeah, fair, and it could be just a quick phone call or text or email again, context matters here, because you know you'll learn a little bit about that person in that moment and you'll get a sense for this person really would like a phone call, or this person is, um, I'm probably going to piss them off if they call them, they're probably going to want a text message yeah um, so you, you know, try to gauge that the best you can.

Dr Dani: 44:19

You won't always get it right, but you're putting some thought into it. Yeah, um, and checking in just to go. Hey, um, I just wanted to say thank you again and see how you were going, that kind of thing yeah, definitely.

Designer Peter: 44:31

When you said be prepared um, literally I do and encourage others to take a packet of tissues, depending on the situation. Their tears can often flow when you start to talk to people about certain situations. Yeah, so the metaphorical or literal box of tissues or packet of tissues what else might you need to take? That's gonna even any. Even just pausing to think about that and sort of starting to imagine what these conversations are going to be like is a really helpful exercise to prepare yourself for.

Designer Peter: 45:12

The other question that I get is if you're doing research within your company meaning that you're researching employees of the company do you need to do informed consent? Sorry, I missed the last bit because I was too busy agreeing with you.

Dr Dani: 45:26

Because right at the beginning I wrote down employees question mark and I wanted to talk about this. So I often get asked the question yeah, if we're doing research with our employees, do we have to do informed consent?

Dr Dani: 45:32

and this is what I say okay we have to explain to people what what we're doing, why we're doing it, how the information is going to be used, who it's going to be shared with the benefit of them sharing that information with us. Often what I do is, let's say, we're going to go and do some research with people that have joined our organization within the last 90 days. I will simply say, hey, we're trying to understand. You know how has it been? We understand you recently joined. I'm doing some. You know I'm having some conversations with people to understand what their first 90 days have been like. We want to use this information to do X, y, z. I won't be sharing specifically your name or your role or anything like that. It's just wanting to capture your information. You know your experience.

Dr Dani: 46:22

So I'll kind of go into a little bit of that and then ask them and then let, especially in this scenario, say you don't have to. You know you don't have to take part in this, but here's how you know. If you do decide to take part in this, here's what that will do. Put that in an email. Email it's a phone call, so it's still informed consent. It's still making sure people understand why. It's making sure people understand what we're doing, why we're doing it, why they were being selected to be part of this, how the information they're being they're going to give us is going to be used. Um, if you're doing research with employees, confidentiality is really really, really critical most of the time. The reason I go into organizations and do employee research is for confidentiality, because they feel more comfortable with somebody from the outside coming in and then somebody within the organization. So I cover confidentiality heavily because I know if I don't, people won't trust me covers everything.

Designer Peter: 47:26

The answer, short answer, is yes. Um, and some things are even more important. Uh, when we're talking to employees, some things maybe less important, but, yes, cool, okay, danny, this has been a really helpful, informative conversation we want to do a little bit of a recap because I feel like we've covered a lot. We've covered a lot.

Dr Dani: 47:42

Let's do a recap and then let's Okay, so we started with what was our definition of informed consent. I looked at a few definitions.

Dr Dani: 47:52

Informed consent is the process of exchanging information so that consumers can make an informed decision about their participation, can understand the possible risks and benefits and again, make an informed decision of whether they want to be part of it or not. We talked about why is informed consent important and we looked back at the history, the Takashiji experiments, which, if you're not familiar, if you're listening and you're not familiar, I really encourage you to have a look, google it because it really gives you a sense of why and and what's gone wrong in the past that we really need to take informed consent seriously. We talked about a why from the perspective. If we call ourselves human-centered designers, then informed consent needs to be part of our practice, because nothing is more, nothing is more human than the process of making sure that the people that we're doing discovery work with are informed about what they're participating in then we went into the how and we talked about different ways to do informed consent, based on context, and then we went through what informed consent needs to cover.

Dr Dani: 49:05

So who you are, who you're doing research for the purpose, why that person was selected. So your customer we know you've gone through hardship. Then you want to cover the procedure which is now. I've got some questions to ask you Can you fill out this survey, whatever that is, risks and benefits. We're not paying you, but you know compensation, reimbursement, that kind of thing where we talked about. We're not paying you for this, but as a thank you, here's a gift card. How we plan to use the information you've given us, how you will keep that information confidential, if it will be confidential, and then contact information and then finally, making sure that we're explicitly asking people yes or no and giving them an opportunity to response without a guilt trip yeah, nice, great recap.

Designer Peter: 49:53

Sat and listened to that, thank you. What are you going to take away from, uh, from this then, danny?

Dr Dani: 49:58

so as we were talking about this, I something came to mind for me, um, in when I was a first year doctoral student, I had this amazing professor, um, dr caroline kenny, who unfortunately now has passed away. But in that first year, one of my first lectures what she's and we were talking about the ethics of research, and she said there's one thing you have to remember be a human first. This conversation that just kind of triggered that. So thank you, dr kenny nice, yeah, I love that.

Designer Peter: 50:30

Be a human being first cool. Uh. Well, how am I gonna? I'm gonna top that. Uh, we're not allowed to have the same takeaway, are we? Well, I, I liked, I really uh appreciate it. And, um, actually took notes on your kind of checklist of what uh informed consent whether it's a conversation or document uh needs to include. So I'm going to take that away and use it, like I said, as a checklist to make sure that that's incorporated. All of those points are incorporated.

Dr Dani: 50:55

Yeah, great chat great chat, as always.

Designer Peter: 50:58

Thanks, peter thank you, danny, and thank you listener yeah, thanks, listeners speak to you next time till next time, bye all right bye.