Audree Fletcher, Head of Service Design at Barnardos
Speaking at Trust & Design #1, 18th July 2017
Transcript: Hi. So, I am head of service design at Barnardos. For those of you who don't know, Barnardos is a charity working with some of the most vulnerable children in society. We work with physically and sexually abused children, with homeless children, bullied children, children with mental health issues, we help neglected children, victims of Female Genital Mutilation, trafficked children, children forced into prostitution, children who are asylum seekers, children who are prisoners. Pretty much the most vulnerable. And so it's a massive, massive challenge, and also a privilege to be working with such a worthy cause. And I'm really excited at the prospect of being able to amplify the efforts of such a worthy organisation through service design. So, I started just a few months ago at Barnardos in a tiny embryonic digital team that had been parachuted into the heart of a hundreds-of-years-old organisation. So we're really, really in our infancy. One of my major tasks is to build the foundations for the infrastructure that we need to do our research and our design. And so, this includes thinking around how we get consent for our research, which is why I've been invited along today to talk about consent and how we handle and manage consent. And one of my projects is how we've gone from using Word Document templates, which is what I was faced with, to actually something that is much more strategic and systematic and, doing justice to the service users of Barnardos. So I'm going to talk to you about that, about some of the challenges that we're facing, and some of the patterns.
So as I said, Barnardos is in it's infancy - as with any new digital team, we have to demonstrate our value really early on by delivering things. So the strategy is the delivery and all that. Except we didn't have any service design or user research capability when I joined. So it still feels a bit like laying the track in front of a locomotive as it's building up speed. I knew the first thing we needed to do was go out and speak to service users, so I decided to try and figure out, what do we already have in terms of consent forms? What are we already using? It's a very large organisation, it's already doing types of research: policy research, market research for instance - what do I already have? So I searched on our intranet and I found dozens and dozens of different consent form templates, as well as the best practice that clearly hadn't been used consistently. So I thought, well okay, for the digital team we're doing different types of research, we're doing types of research that have never been done in Barnardos, we are not just focusing on children and young people but we're also doing research with adults, subject matter experts, social workers, personal advisors, lots of other categories that traditionally Barnardos hasn't really sought consent form, because they're worried about the children and young people quite rightfully, but because as a digital team we might be taking video or screenshots or images of these adults, we have to treat their rights in the same way that we would treat the rights of these young people.
So I decided that if I were to design a Word template for each of these different scenarios, I'd have sixty or seventy different Word templates. I really don't like Microsoft that much. So we mapped out all of the different user needs for the consent forms and information sheets, we did research planning, we went through the recruitment process of participants, the sessions themselves, and then the management of the data once it's stored. So it was really clear to us that consent isn't an experience that happens in the five minutes before your interview, actually at the very start when you're looking to recruit your research participants, you're telling them what to expect from the session. You're giving them part of the information that they will use to make their decision. So we turned what became an end-to-end, front-to-back journey of user flows into a road map, carved out an MVP for development, and we've been testing it on the research projects that we're currently working on, the wider customer-facing research projects.
So we've been doing - well, we've done - paper prototyping and clickable prototyping, something that Barnardos has never done before. And we have our developers working on some actual things, this is an early version - we steal everybody's design patterns. But we're putting the hard work in to make things simple. We want researchers to prefer to use this tool rather than inventing the consent wheel each time. But this is only half the equation, so the researchers are only one user group for this information and consent form and arguably, we're all here for the kids so they're actually a more important user group. They will just experience the digital tool, they'll only experience a part of it, quite a narrow part of it but it's actually, it's all about them. So the project started off quite pragmatic and focused on the efficiency of me and my team and me desperately trying to avoid Word, but as a project it's got much much larger. And it's because - oh, there are loads of reasons. It's because not - not everyone in our organisation doing research self-identifies as a researcher, so actually there's consent being taken by fundraising, by marketing, by comms, by our evaluation team, by our policy team, people doing lobbying for government. We are taking case studies, we're taking video clips for fundraising. There's an opportunity to add real value by increasing the consistency, improving the quality of the consent we get, because it is informed, because it's - we are confident it's being freely given. And also saving time, which is valuable in a charity, and managing the reputational risk. So it's a much bigger endeavour than we originally anticipated.
It's also really important because consent and recruitment are bound together in service delivery organisations. So we, we're having to step back now and review - almost conduct part of a discovery again - when we started testing with users, we realised we're recruiting through children's agencies, we're not participant recruitment agencies. And so there's a weird power dynamic there because people who are responsible for your welfare, for providing the services that you use every day, for housing you, they're the ones asking you to turn up to this research session. Can you say no? If you can say no can you really be honest? And so we have been thinking about how we manage it so that children don't feel co-erced. When we're working with the children, we need to get parental or carer consent, but actually there are broken families - mostly broken families we're working with - how do we manage conflicting consents there, who do we turn to. And then there are cases where getting parental consent would put a child at risk. So as I said at the start, we're working with victims of sexual abuse, we're working with victims of FGM. It would put them at risk to approach their parents to say "Your child has been identified as a victim". So, we're having to carve out what would be outlier user groups, so actually they're not outliers and they are the ones that we are charged with offering this protection for. And then of course, as I said, we have lots of children with mental health problems, we have lots of children with major learning difficulties - we're talking about fully informed consent, can they really consent, how do we test whether or not somebody in front of us - whether they are six, 12, 15 - really understands what it is they're signing up to. For us, stories of a 12 year old who agreed to be a model for some pictures for a sexual abuse campaign for fundraising, didn't really consider how she'd feel about being the face of that campaign at 16. Can they really make decisions on behalf of their future selves at that age.
So these are important issues to explore. It's also complicated because Barnardos has two roles here. So we are a corporate parent, we're responsible for doing at least as good a job at parenting as a good parent would do. So we're supposed to be safeguarding them, we're supposed to be promoting their welfare, we don't want to be intrusive, we don't want to upset them, we want to do what's best for that child as an individual. But at the same time, we're a service provider, we have a responsibility to improve our services for all of our services users, so we can't shy away from talking about upsetting experiences if we're designing to prevent those upsetting experiences in the future. So we need to know about those experiences, we need the insight and so we want them to consent. So there's a tension there, between wanting to protect them and keep them away from sensitive conversations that might upset them, but also wanting them to consent to sharing that. So we've been designing ways of navigating those choppy ethical waters.
So we have these four things, I'm going to take you through them. We've pulled together an ethical research protocol. So they're essentially principles for conducting design and research in Barnardos.
Yes, so this is what we've written for new researchers coming in, it's also a document that we've written for our organisation internally which is full of thousands of incredible people, very very passionate about protecting these children, to reassure them that yes we might be wearing jeans and walking around with shiny Macbooks and looking like we just graduated, but actually we're taking this very seriously. So those are some of the principles. We're using it to guide our decisions around research design, but also to reflect on our research practice. Okay. We are targeting research training on the highest risks so we have specific training for researchers going in, looking at safeguarding and what to do if you encounter a child at harm or somebody else that is at harm - what to do when there are those disclosures, but it's more than, it's more than providing them with training, it's also providing information at the point of need. So, um, I'm sure it's really really familiar, but guidance is like a hundred page document, to say 'This is the way you must behave' - actually, if you're confronted with these situations in real life and you haven't practiced, you haven't done any roleplay, you haven't had any coaching, lots of people seize up - don't really know how to react. So we are, we are doing both - we're giving quite intensive support to researchers who are going to be going into really, really risky areas for the first time. And we are providing information they need when they need it, throughout the research and design phase.
We have, like many charities, a research ethics panel. And we are inviting them to debate our research design and our practice, so our research plans, our discussion guides, before and afterwards, so that we can kind of collectively raise our game. And, we are and have been using patterns. You might recognise these. I've just singled out a few, we use up front consent, opt in for consent, we're building data expiration - data access expiration into our system. They're really important patterns for us but this is being done as a broader data transformation programme that's underway, because Barnardos takes this very very seriously. But we've also been generating and testing something that I'd describe more as research patterns and specific consent patterns. So, because consent should be fully informed and freely given, we're testing our information sheets and our discussion guides for comprehension with users, so we're asking them questions, we've designed questions, we are checking the assumptions that they're making about how we're going to treat their data and how that feeds into their decision to consent. We are checking what information they're retaining after reading the information sheets. We are experimenting with slowing down the process at particular points so that they can take the time to really understand what it is that they're signing up for. We've got research checklists and discussion guides to encourage really strong consent management behaviours from our researchers, so we don't just ask for consent before the session, but then after the session we will check back with the kid, is this what you expected, are you still happy to share what you've told us today, and so this is where we're going and as we - as this service matures, it's going to be affecting all of those other categories of consent within Barnardos, hopefully, so that it's not just the service design and research terms within digital, but actually a much broader approach to keeping the promises that we make to children in those sessions.
So that was a whistle-stop tour of what we're trying to do and how we're going about doing it, as I said, we're not finished, we've still got plenty of research and testing to do, but it's testing well so far…