Researchers & designers: let's fix our broken consent forms.
This post is the origin story for one of many Bright Harbour resources we are making open-source and publicly available: our consent form template for research.
Feel free to use it/share it/ adapt it as you please. If you’ve got ways to make it better, please tell us.
2 uncomfortable truths: most consent forms don’t do the job well, and far too many are straight up unethical
The Bright Harbour crew has designed and delivered a whole lot of consent forms in a whole lot of different contexts— and seen the ways that this ‘standard’, much neglected bit of the toolbox varies from culture to culture.
Clinical research. Academic studies. Government and charity research. Co-design and social innovation . Social care work. Commercial market research. Consent forms for the general public. Consent forms for marginalised groups and ‘vulnerable people’. Consent forms for kids and families.
The sad truth is that across all of those different contexts, we’ve all seen a lot more bad practice than good. A whole lot of bad consent forms are being issued by good people who care a lot.
You might recognise some of these errors from your own travels. 10-page consents full of legalese that feel like participants can’t question ‘the experts’, or even read as if they’ve done something wrong. 1-page consents that don’t actually meet basic participant rights requirements, including talking about how data will be used or what’s involved in participation. Forms that say you’ll delete data at some legally appropriate date, which teams have no actual plan or process to follow through on. Smart folks in smart teams who’ve never heard of GDPR* before, and whose consent forms raise big ethical red flags — and a whole lot of legal risk.
(*Note to the wise: If this is you, you aren’t alone, but you’re travelling in dangerous lands and need to get to safer ground — turn left, here or here, quickly).
Lots and lots and lots of forms that participants don’t read, or don’t understand, and/or don’t understand they don’t have to sign if they don’t want to.
Torpedoing the whole point of consent in the first place.
And it happens even to good teams. Consent forms are part of the ‘admin’ of research, and quickly become part of the furniture: unexamined, unloved, uncared for. Old templates containing years or decades of professional baggage get hauled out with every new project, edited (often making them longer every time, oops) and re-circulated. Rinse, wash, repeat — and the entropy and dust shows.
The first thing participants see from us is one of the least well thought out elements of the research journey.
Here’s the high horse bit. Ready?
We all have to do better. Leagues better.
We owe it to our participants not to fail basic duty of care and ethical conduct in our very first contact. Particularly as we are all working in spaces where every contact matters, often with people experiencing the hardest challenges of their life.
Bad consents contribute to bad relationships between participants and research, and often help establish dysfunctional power dynamics between participants and ‘expert’ interviewers.
We’re all smart and resourceful enough to do better. Lack of knowledge, lack of time, and lack of consent form love aren’t good enough excuses.
An even more uncomfortable (for us) truth: we’ve been part of the problem.
So, this is awkward.
In our team, we’ve got folks who have trained countless researchers and designers; who have lectured on the importance of ethics and consent and participatory practice to graduate students; who have cringed at all that ‘bad practice’ we’ve talked about above and tried to help whip it into shape.
But when we recently started preparing for work on lived experiences of food insecurity under Covid-19, we examined the participant research experience — from consent form onwards — with fresh eyes. Challenging times call for better care, right? So we took a look at the consent to see if it needed a tweak.
What we found when we took an honest look at the consent form we use for research on sensitive subjects was that it was — a bit less shit than others we’d seen. And legally compliant.
That’s it. Just a wee bit less shit, and not failing at the basics. What a standard!
None of us a consent form we were particularly proud of, that communicated with participants the way they deserve. Must. do. better.
We’ve had a stab at creating a more loved and loving consent form. Please help make it better.
What we’ve got now isn’t perfect, but it’s a start.
We shared our template openly with research and design communities on LinkedIn and Twitter, and got loads of useful feedback and little tweaks that have improved it (thanks all!).
Our current template majors on:
ensuring participants understand what happens if they choose to take part so that they can make an informed choice to participate (of course)
levelling the power dynamic and set the stage for open, honest, safe conversations. We’ve added some non-standard language that hopefully communicates our care, our belief that participants don’t owe us a damn thing, and our commitment to their comfort.
being very explicit about participants’ rights, beyond data handling and GDPR, though including these basics. This includes reassurance about potential worries like withdrawal of consent affecting relationships with the research team or client. Participants worry they’ll mess things up for you. They need to know that’s not an issue.
default provision of follow-up contact to check in after sessions (part of a wider participant care plan we’ll share in a later post).
default provision of findings summaries to participants that want them to avoid an extractive ‘someone came, took my story, and then skipped town’ feeling so common to research participation.
It’s still not perfect, we’ll still keep tweaking, and we’d love your help.
We all have our blind spots, ‘experts’ even more so, and even this modest evolution of practice has required shaking off old habits and standard phrasing, adjusting a default a ‘professional’ but distancing tone that is so common in research practice.
Please help us improve it, and share freely the next time you get a ‘GDP-what?’ stare from good teams that care a lot.