The way a question is worded on a digital test, or the language used to describe someone’s risk, can be the difference between a person benefiting from the experience and results or ‘switching off’ and walking away. The people who notice these things most clearly are not the researchers and clinicians. They are the people taking the tests themselves.
That is why our Lived Experience Advisory Group is becoming a permanent part of how we work. They will shape what we build and review what we publish. It is our hope that when something is not landing the way we thought it would, we would get feedback to that effect.
What the group has shaped
Their input has shaped the Cognitive Function Test in particular. This has helped us rewrite the opening screen after telling us the original wording felt too clinical, and pushed for the results page to include more context for people scoring in the lower range, where the right next steps matter most.
They have also given feedback on the Dementia Risk Index questionnaire. The questions on diabetes went through several rounds of plain-English review before the we felt confident the wording was both understandable and accurately reflected the scoring for people with Type 2 diabetes that is under control: previously, someone with Type 2 diabetes (under control or not) would have recieved a poor, ‘red’ score which fed into their overall results.
Beyond the digital tests, the group will feed into:
– The tone and pacing of the COGNITION programme content
– Recruitment leaflets and participant information sheets used in our research
– Public-facing language about dementia risk, including how to talk about prevention without overpromising
– The way newsletter content explains research findings to readers without a clinical background (as practitioners, it’s easy to slip into the trap of using langauge that is too clinical). We get and appreciate feedback on content like this.
Who is on the group
The group is made up of members of the public from across the UK. Some have used our tools and wanted to give something back. Others came to us through their own concern about a parent or partner living with dementia, or because they had looked at an earlier version of the CFT and decided it was not for them and wanted to tell us why.
We have made deliberate efforts to include people whose voices are often missing from research. That includes people from lower-income communities, people living in rural areas, people who do not feel confident with technology, and people from minority ethnic backgrounds. Cognitive decline does not affect everyone equally, and the work we do should not be shaped only by the people easiest to reach.
Members do not need any background in research or medicine. What they bring is an honest perspective on how this work feels from the outside.
How it works
We are in contact with members and regularily ask for feedback and engage with feedback where it is independantly offered
We always tell members what has changed as a result of their input, and we are honest when something they suggested has not been taken forward, and why
Get involved
We continue to look for new members, particularly people whose backgrounds and perspectives are not yet well represented in the group. There is no formal application process. Send us a short note telling us a little about yourself and why you would like to be involved, and we will be in touch.
Proposed Community Pharmacy project
This group will meet online, with occasional in-person sessions when we can. Meetings last around 45 minutes, and between meetings members will be asked to review, for example, communications materials.
Contact details:
info@foodforthebrain.org
Put ‘FAO Kim/Lived experience advisory group’ as the subject line
