Dr Jack Arnold and Dr Shipa Muhammad are developing a digital checklist for people affected by lupus who are preparing for clinic appointments. Based on the concerns a user adds, it will create a prioritised list of things to raise with a GP. It will also share steps people can take themselves to improve their health.
One of the aims of the checklist is to help make sure things like bone health and risk of heart disease get picked up, as these are often overlooked. It is also designed to help people feel more confident managing their own health.
Before taking it further, they would really value input from people affected by lupus. Do the content and tone genuinely reflect what matters to patients? Is any information missing, or is anything sensitive handled in the wrong way? The team is also keen to develop the tool in multiple languages, to reach as many patients as possible.
Deadline to provide feedback: Thursday 31st December 2026
When and where: In your own time, online
What’s involved:
- Read an optional review guide (around 5 minutes)
- Review the digital pre-consultation checklist (around 5 to 15 minutes)
- Send your feedback by email
Total time: around 5 to 20 minutes, depending on how much detail you go into.
People they’re looking for:
- Living with any type of lupus, including UCTD or MCTD, or caring for or supporting someone who is
- Any age, background or experience of lupus care. If you’re not sure it counts, it does.
No research experience is needed to get involved – everyone’s thoughts are welcome!
Up to 15 people can take part in the review.
Payment & Expenses: Not provided
How your input will be used: It will directly influence the future development of the tool (for example, the questions asked and its design and outputs). This includes how the research team handle sensitive topics like pregnancy or mental health.
Feedback: The research team will send Lupus UK a summary of what changed, which we will pass on.
Interested in getting involved? Email Francesca at [email protected] to receive the checklist link and review guide. Please mention the opportunity you are interested in.
Questions about the checklist? Email Dr Jack Arnold at [email protected]
Created by: Dr Jack Arnold and Dr Shipa Muhammad, University of Leeds.