ReadClear is an app to support reading in posterior cortical atrophy (PCA) that my team and I co-produced with a group of people living with PCA and that we tested in a randomised clinical trial. I have blogged about the value of this PPI process in the past but I have never written about how we supported participants to engage with the app during the trial and how co-production continued during the trial itself. Dr Ivanna Pavisic and Dr Dilek Ocal were the colleagues who conducted the ReadClear home-based trial with me. They travelled around England training participants on how to use the app and facilitating a context that led to new rounds of priceless feedback. In the interview below, they share their learnings and personal experience.
Aida: The ReadClear trial involved many home visits and contact with participants. Can you share an anecdote you particularly cherish from that interaction?
Ivanna: The strongest memory for me is when one of the participants gifted me with one of their paintings which I cherish to this day. One of the important parts of the training was to ensure I had a good rapport with the participant. Sometimes this involved speaking about their passions and/or background. Although this came quite naturally it also influenced how participants ended up approaching the app. For instance, someone with a tech background would often be much more critical on functionality and options available while someone with an artistic background would often find new and creative ways of approaching app features.
Dilek: On one of the first visits – which was during my birthday month – when collecting the participant’s demographic information, we realised that the participant’s birthday was one day before mine which led to a conversation about our star-sign and how we had the best star-sign of all the signs. A few weeks later, on my last visit, I took a break to go to the toilet and when I got back to the living room, both our participant and his wife started to sing happy birthday, pointing at a cake with candles on the table. It was my birthday that day and they remembered. This gesture made me feel all warm and fuzzy inside.
Aida: Your role was critical for the success of this trial. Can you share one problem you faced and the solution you came up with?
Dilek: The day after conducting the first training visit with one of the participants, I received a call from his wife saying there was a problem with the charger as it won’t charge the tablet. After multiple unsuccessful attempts to solve the problem over the phone, I decided to go back to the participant’s home to see the charger for myself. When I got there and the wife handed me the charger, all the problem needed was to extend the Samsung wall plug charger. I had given her the charger un-extended and not being familiar with this “new” type of plug, she couldn’t plug it into the wall. This problem taught me a lesson: to never take other people’s experiences of the world we live in for granted.
Aida: You trained many people with PCA in how to use the reading app. Can you share any observations about how people engaged with ReadClear?
Ivanna This varied considerably. Some participants really engaged from the start, then disengaged and then engaged again. For others it was more stable. I would say that getting used to the app and its features was a process for almost everyone. Sometimes it came with a bit of resistance, especially for avid readers who said sentences were a bit broken down and that affected reading comprehension. However, it truly was another way of reading and like everything else which involves learning, it takes time which is why these training sessions were so important.
Dilek: I remember a mix of sentiments expressed by the participants when interacting with the app, ranging from excitement to frustration: excitement about the possibility that the app might be able to give them back the ability to read, and frustration by the realisation that even with the app, reading needed an adjustment. This meant that the participant and I had to let go of what we understood as the ability to read and be open to a new and highly personal form of reading. This was not always possible, but when it was, it would often result in the participants re-expressing their excitement.
Aida. Do you have a piece of advice for other researchers who may be planning this type of trial?
Ivanna: I would reiterate that co-design is extremely valuable. There is increasing emphasis from regulatory agencies in terms of the importance of the patient voice and the view that quality of life measures should be used as endpoints in clinical trials. I don’t see a better way of doing this than involving patients from the very start during the design phase. I remember we were actively thinking of how we could incorporate participant’s feedback until the very end!
Dilek: In a trial like ReadClear which involves being at the participant’s home, in their car and at their dinner table, there is a shift in the dynamic between researcher and participant towards an increased closeness. This comes with two consequences: one, it may give way to more challenging and frank discussions and questions raised, which requires a shift in the way the researcher approaches the participant and their family; and two, the increased closeness might enhance or trigger emotional challenges for researchers.
Thank you Ivanna and Dilek for sharing your experience!
Dr Aida Suarez-Gonzalez is a Clinical Neuropsychologist and Senior Researcher at the Dementia Research Centre, UCL Institute of Neurology at Queen Square. With many years clinical experience working in Spain, Aida now investigating non-pharmacological interventions, services and assistive technologies to support people living well with dementia – this work has included creation of the ReadClear App to support reading for people with posterior cortical atrophy (PCA).