In this post I share my experience as a Posterior Cortical Atrophy Researcher and clinical scientist conducting a study that involved co-design from beginning to end. I would like to illustrate that there is no a single way to do Patient and Public Involvement (PPI) and that developing your own experience is the best way to understand the process and get to accommodate your needs and the needs of your participants.
Patient and public involvement may sound self-evident for scientists with a clinical background, as it is my case. However, a lot of the research that it is being done is led by non-clinical scientist. Therefore, formally branding that specific human interaction as ‘PPI’ and producing government-backed guidelines to support it, makes a lot of sense to me. Even if you feel confident with your PPI skills, you may also benefit from using resources as those offered by INVOLVE (http://www.invo.org.uk/resource-centre/libraries/putting-it-into-practice/)
As a clinical neuropsychologist, I have spent the last 15 years of my life working with people living with dementia. On October 2014 I moved from Seville to London to join the Dementia Research Centre at UCL to conduct a study that aimed to build a reading app to facilitate reading in people living with Posterior Cortical Atrophy (PCA). PCA is a rare dementia characterised by progressive difficulties in visual processing and other functions associated with the posterior cortices of the brain. Reading is one of the earliest and most disruptive symptoms of the disease. The research team aimed to design a tool to help people with PCA to retain their reading skills.
As a starting point, we decided to build a very basic prototype of the app (based on what we already knew about what might facilitate reading in PCA) so our participants had something tangible to feedback on.
We then asked 5 people living with PCA to help us with the design by providing input and feedback. Although I appreciate the value of steering groups, which I have used in the past and find of great value, I chose to run individual visits this time. I visited my patients and their partners at home, one at a time, because this way worked better for both of us. In my visits I carried with me a tablet with the app’s prototype installed. We spent time together exploring settings, menu lay-outs, ways to modify the text, buttons, colours … This process required a very personal approach. By focusing on one person at time I was able to modulate my questions (not always verbal questions), adapt to each individual’s way to interact and provide feedback, and keep distractors to a minimum.
Very often, in particular at the beginning of the study, we encountered big barriers. I must confess that some evenings, while travelling in the train back to London from a home visit in the other side of the country, I felt defeated and overwhelmed by the complexity of the challenge. The barriers were multiple and complex and there was no previous experience of assistive tools designed for this population. I wish I could say “these of those PPI guidelines were useful to appease my uneasiness at that time” but the reality is, beginnings were tough.
And then, one day, not really that far under the line, it happened. My participants and their partners very naturally transited from the phase of ‘barrier identification’ to the ‘solution storming’. “How about shortening the length of the lines – so I experience less crowding?“, “How about tapping instead of scrolling – so it’s easy for my apraxia?”, “How about automatic book marking?”, “How about highlighting the line I’m in –so I don’t get lost all the time-?”. The ball was rolling.
I did keep in mind the core principles of co-design while working on this project but, frankly, we did not much ‘sharing of power’. I followed every single indication my participants gave to me, because they were simply much better than any of the ideas than me and my team came up with.
As my trust in the problem-solving power of my ‘co-design’ group grew, I started feeling more confident and comfortable when new obstacles came up. I audio-recorded all the visits and listen to the audios when I was back at the office and I used to write a list of bullet points to discuss together with my software developer. It also helped me to reflect about the way we (participant, partner and myself) interacted as a group.
Over the months that followed (9 to be precise), I observed a lot, I listened a lot and we tested a lot of suggestions. My evening journeys back to London did not feel defeating anymore because we were making great progress. We were all time applying new modifications to the app and running to home visits to collect more feedback. I did not plan in advance a fixed number of visits per participant. I continued going to see them as much as I needed until we figured out an app that could enable pleasant reading according to my participant’s own definition of it.
Three people asked if they could be given a tablet to play around with the app not only during my visits but anytime in between. They argued that this would allow them to provide me with better quality feedback. So, they got their tablets. Feedback started arriving also through email and power-point presentations containing suggestions for potential designs and solutions.
Two people had a background in software development or engineering so they brought in their double expertise, by experience and by background.
Some people were in very early stages of the disease and others in advance ones, so we could listen to plurality of voices and receive advise on how to customize the software to tailor it to different stages of the disease.
We made sure we did at least one social event in which the app was featured while still under development. This gave us the opportunity to capture feedback from a big group of people. We did so by giving a talk in one of the PCA Support group meetings held by RDS (http://www.raredementiasupport.org/posterior-cortical-atrophy-pca/ ). We also brought a few tablets to the meeting, so people could play around over lunch-time and between talks breaks.
By the end of this phase we tested the app with a new group of 19 participants. We administered feedback forms to continue collecting suggestions that we could use to improve the final version of the app before this was uploaded to Google Play. Most of the participants in this new group were able to use the app independently or with minimum support and only minor tweaks here and there were recommended for improvement in the end.
Patient involvement and co-production is not a one size fits all and it may work differently for different people and different studies. PPI means to me bonding with my participants and open a unique bridge of communication that suits us both, so we can produce something useful together.
This week we are working with the Alzheimer’s Society to share stories on how Patient and Public Involvement has shaped and influenced researchers to see more take a look at #PPIimpact
Dr Aida Suarez-Gonzalez is a Clinical Neuropsychologist and Research Associate 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.
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