I’m attending a research co-design workshop this week as a Expert by lived experience as well as an evangelist for digitally enabled peer support networks
Before the session, the research team sent pre-reading materials.
They were well-intentioned.
They were also written in a register that assumes the reader has limited prior engagement with research, limited confidence, and limited cognitive or literacy capacity.
That’s not a trivial irritation.
It’s a blind spot worth naming.
Loss of physical or communication function after stroke is routinely conflated, by institutions and professionals alike, with loss of agency, judgement, and intellectual capability.
That conflation is one of the more corrosive experiences of stroke survivorship.
Materials written in this register categorically reinforce it. They are one instalment in the relentlessly cumulative message that capability has been lost.
The question I want to press is not just about the pre-reading. It is about where these assumptions (subtle biases) travels too?
A team whose working model of stroke survivors defaults to “person requiring simplification and reassurance” will not leave that model to its participation documents. It will shape how facilitators frame questions, how they interpret and record what contributors say, and how those contributions are written up in analysis and publications.
More consequentially, in a co-design project, it will shape the product itself. A system or intervention built by a team that unconsciously treats stroke survivors as people who have lost agency will embed that assumption in its logic, its interface, and its language.
That product then goes into service delivery, where it hands the same assumption to every clinician, coordinator, and frontline worker who uses it. The attitude gets built in, distributed at scale, and becomes culture. Self-affirming. Very difficult to dislodge.
The #StrokeThrivers who use it encounter, in the product intended to support them, the same reductive model they have had to push back against to assert there self-worth ever since their stroke.
We didn’t lose our judgement. We didn’t lose our opinions, our previous experience. We shifted our capability set, lost some and gained some.
I’m raising this because it deserves a proper conversation. I am suggesting it is worth the team asking how it will test for it.
Does the team have a mechanism for checking whether its interpretation of PPI input matches the potential, matches what contributors actually intended, or whether it under performs due to unconscious expectations or filtering on the way through?
If you work in research, health technology, or co-design and you’ve opinions about this, I’d be interested in your experience.