Have you made any new year’s resolutions? I did. I made one. Go to the gym more? Nope, not that. Drink more water? Nope, should do, but not that either. Make consent forms better? That’s the one.
I enlisted the help of my super-fantastisch colleague, content designer James Green, and I just might need your help too.
Have you ever had issues with consent forms?
Do you know anything about demand avoidance and extreme anxiety?
Why do I ask? Well, motivated by an experience during a research session in December, we are planning to run a design sprint at the end of February to solve a problem. We have one outcome in mind: can we make giving consent easier for people with high anxiety and demand avoidance?
It might seem like a niche challenge, but if we get this right, it could have far-reaching implications. It could make consent forms better.
As a user researcher, I’m used to battling with the process of obtaining consent from research participants. I tinker with each consent form for each round of research to make sure it follows best practice guidelines, but also makes the process as easy as possible for participants. It’s just a research session, right? It shouldn’t be complex for people to join in and give their opinion, if they’re willing to.
A consent form shouldn’t ever be a barrier to participation in research.
Why we're doing this
For a current project, we’re working with young people with SEND (special educational needs and disabilities) and their families. We’ve done several different research activities as part of this work, and each has had its own consent form.
A recent activity involved running research workshops with several groups of young people with SEND across three schools. At the last school, one young person came into the workshop. He seemed enthusiastic – he'd volunteered to come along and came cheerily into the room, introducing himself to me with a big smile and lots of energy.
When the consent form was handed out, the young man didn’t feel like he could say yes to any of the three questions on the form.
The form asked him firstly to agree that the session could be audio recorded, secondly that we could take photos of the activity with no faces included, and thirdly that he’d like to take part in the research at all. I explained that I didn’t have to record the session, that I certainly didn’t have to take pictures, and that we would really value his thoughts and opinions but he was, of course, free to return to class if he’d prefer.
He did, and I immediately felt like we’d lost a great voice for our work. I don’t know the young person, and I only knew his first name – I know nothing about the reasons for him being at a specialist education setting for young people with SEND. But the experience made me think.
PDA and Demand Avoidance
Let me be very clear: I’m not a SEND expert at all, I’m a research person, currently working with a very excellent SEND strategy team. But I know of young people with PDA (pathological demand avoidance), of other autistic young people, and others with extremely high levels of anxiety. I also know that demand avoidance isn’t simple and it presents in many ways. I know there’s an understanding now that demand avoidance, or anxiety around demands, provokes an “I can’t do this” response, rather than an “I won’t do this” response. For someone who experiences issues with demand avoidance, having requests made of them or being expected to follow a recipe or set of instructions, can provoke debilitating anxiety or discomfort.
For more on PDA, the PDA Society has more information and for more on demand avoidance in autism you might want to refer to the National Autistic Society website.
For this current project, we’re just coming to the end of our discovery phase and will soon move into alpha. It’s an exciting bit of work; the next few months will involve heaps (hopefully) of design workshops and user testing, with young people with SEND involved as co-designers as well as research participants.
We want to make this process as inclusive as possible. No participant should fall at the first hurdle, the dreaded consent form.
The design sprint
We’re going full design sprint with this: 5 consecutive mornings spent working on the same problem to (hopefully) come up with a working solution by the end of the week.
Can we understand what a consent form feels like for someone with PDA or someone who struggles with anxiety around demands? Are there any alternatives? Can we make a demand-avoidance-friendly consent form?
And this is where we need your help.
We’re looking for people to help us meet this challenge. We’d like to find all kinds of people to get involved including:
- People with lived experience of PDA, demand avoidance or extreme anxiety
- Professionals who work with young people with PDA, demand avoidance and extreme anxiety
- Content designers, user researchers, service designers
- Anyone with a professional interest in inclusive design research practices and consent forms
You don’t have to commit to working with us for the full design sprint. Some days will be just online, and some will be run in a hybrid way so you can join in-person or online.
What the week might look like
Monday 24 February: Explore the problem.
We’d like to hear from people with lived experience, professionals with an in-depth understanding of demand avoidance, and anyone who has tackled a similar problem to this before. We just need to learn as much as we can, as quickly as we can.
Tuesday 25 February: Ideate
Here we’ll run some ideation workshop sessions to brainstorm ideas that might help us create the consent form we’re looking for.
Wednesday 26 February: Build solutions
In this session, we’ll have a go at constructing some forms that might work.
Thursday 27 February: Evaluate solutions
We’ll spend some time dissecting what we’ve done so far, using professional judgment to decide whether we have a solution that’s ready to test.
Friday 28 February: Test solutions
While it’s going to prove difficult (and a bit meta) to replicate ideal testing scenarios for the form/solution, we’d like to spend this morning testing the form. For this we’d like to invite people with lived experience of PDA and extreme anxiety to test and react to the form we’ve created. We’ll need to spend some time thinking about the best way to do this, and we’ll seek lots of advice on this in advance. Then in the afternoon, we’ll play back our findings from the week and assess whether or not we’ve been successful.
How to get involved
We’d really love to harness some collective brain power for this challenge, and we’re excited to get going. If you’d like to be involved with any of the days of the design sprint, please get in touch – email claire.craig@essex.gov.uk or james.green2@essex.gov.uk. If you’d like to share any thoughts with us without joining, similarly, please get in touch. We’d love to hear from you.
Let's make consent forms better!
2 comments
Comment by david posted on
Hi. My son has PDA and I love the idea that you are looking into making forms easier for him to fill in. Good luck.
Comment by john mortimer posted on
With regard to co-design, the only thing I have need ed to do is to ask participants if they are happy to go through a new process that will be either the same or better than what they normally would go through. I have never had anyone say no!
The information that we then record is then anonymised with regard to identifying individuals. And if this is part of a new way of working (research), then the normal restrictions on GDPR are reduced which makes it easier to collate and analyse the information.
Obviously, if someone example is taken as a case study for others to see, photos or videos are made, then individual agreement is needed.
I have never needed to ask anyone to physically fill in consent forms, verbal confirmation is sufficient if it is done clearly in an agreed way, noted, and performed in every situation with a person for the first time.