How lived experience shapes CareLoop

By Dan Stapleton, Product Manager at CareLoop Health 

Voices of people living with psychosis and their carers have always been central to CareLoop Health. Our platform emerged from over 10 years of research where lived experience shaped every stage of development, and since our launch, we’ve continued that commitment.  

I’ve recently run four Patient and Public Involvement (PPI) workshops to gather feedback on CareLoop, continuing to ensure it is meeting the needs of people who use it. Our Lived Experience Advisory Group is made up of indviduals who  have been using the app for a few months,  parents and carers  along with  peer support workers with lived experience. We have further workshops running up to the end of the  year and  plans to run monthly sessions next year. This steady rhythm means we can develop features, test them with real users, and refine our approach based on what we learn.  

I really enjoy these sessions. I’m constantly inspired by the openness, insight and generosity of everyone who takes part, and it’s fantastic to hear the positive ways in which CareLoop is helping prevent relapse in those living with psychosis and empowering them to take control of their care.  

The four Lived Experience Advisory Group sessions we’ve run in the Southwest so far this year have had a transformative impact on our work. These aren’t tick-box exercises – they’re genuine collaborations where people with lived experience, along with their families and carers, help us understand what really matters. 

“I would thoroughly recommend the use of experts by experience in all aspects of mental health work as I find that is the best way forward for support, within Devon Partnership Trust and other trusts nationally.” Janette, carer, volunteer and partner of Paul who lives with schizophrenia  

What we’re learning 

The insights from these groups have been invaluable. We’ve worked together on reviewing content and messaging throughout the app, discussed how to better include carers and parents in the support journey, and explored the onboarding experience from multiple perspectives across different stages of care. 

Participants have helped us confirm new design features, reviewed the language and tone we use, and provided detailed feedback on specific elements. The Cornwall Early Intervention in Psychosis (EIP) service gave us particularly helpful feedback on questionnaire style, language and data views, which has helped us test entirely new ways for people to engage with the app. When Cornwall EIP shared specific feedback from their service users, we took those questions straight to our latest Lived Experience Advisory Group.  

Graphs and data 

The feedback was clear: users didn’t understand all the data, and some of the language was confusing. In response, we’ve refreshed the graph and data section in the latest version of the app, adding extra details to explain the numbers and an additional help section with language and data information. Following the user group discussion, we’re continuing to refine the help text and working on making the data views warmer and more accessible. 

Language that matters 

We heard that some questionnaire language – like the word “relapse” – could be triggering. We’ve done a specific review of this language with users and received some excellent suggestions for softer alternatives. We’re now reviewing these with our clinical team to ensure they remain clinically valid whilst being more accessible. We’re also implementing question mark buttons and dictionary-style highlights on certain text, making it easy to add definitions or explanations exactly where they’re needed. 

The back button question 

Users told us they wanted a back button in questionnaires to edit their answers. This sparked a really useful discussion about when back buttons are and aren’t used in clinical settings and surveys. The group agreed that a back button might not be appropriate, but we’re now developing pre-questionnaire and in-questionnaire explainers so users understand why they should move forward, and why making a mistake won’t impact the outcome. 

Getting notifications right 

We heard that reminders were coming through at unhelpful times of day. Our discussion with users reminded us that everyone is different and will use reminders in their own way. Our goal now is to gradually build flexibility into notifications so they can be set up differently for each user if needed, giving people more control over what happens and when. 

What happens next  

With all these insights, plus some additional alternative questionnaire styles we’re developing, we’ll be building prototypes and bringing them back to the next Lived Experience Advisory Group this month. We’ll get feedback, see how they work in practice, and continue this cycle of listening, developing and refining. 

This approach isn’t new for us – it’s how CareLoop was built from the very beginning. By working alongside those with lived experience every step of the way, their expertise shapes everything we do. We’re grateful to everyone who gives their time and insight to make CareLoop even better.