How might we advance dementia research through the use of citizen engagement in science and mobile applications?
The challenge for this Ctrl Group collaboration was two-fold. First, to develop a strategy for design a citizen science platform to advance dementia research in the UK. Secondly, to research, conceptualise, design, and develop two mobile applications that build on and leverage the citizen science approach to dementia research that can be launched via the Dementia Citizens platform.
We conducted research with academic stakeholders and guided Steering Committee decision-making to develop the initial strategy. Once the scope was defined, we designed, developed and led contextual research of the two launch apps for Dementia Citizens and worked with Ctrl Group designers and developers to build and beta test new applications connecting researchers and people living with dementia.
Over the course of this initiative, we developed a new strategy for the Dementia Citizens platform that included a number of application concepts. Two of those concepts were selected, refined, fully designed, and ultimately developed and launched for iOS devices. As of December 2016, the two applications, Playlist for Life and Book of You are in beta testing and soon to be available for download.
Our work on Dementia Citizens began when the Department of Health asked us to develop the strategy for a citizen science platform to advance dementia research. For this we reached out to the academic community to interview dementia researchers and experts about the potential of citizen science to support their work. We developed prototype models of a citizen science platform for dementia research, and shared these in our interviews. Through this process we led both open and very pointed conversations with the academic community, and as a result developed potential strategic directions for a dementia citizen science platform. This enabled us to guide a shared decision-making process with the Steering Committee. The outcome was a decision about the format of the platform and the communities it would bring together, along with two academic partners for the two launch research apps.
When the project was handed over from the Department of Health to Nesta, we were commissioned to design, develop and research these two launch research apps. Our approach brought together agile, iterative design and development with contextual research. Across discovery, alpha and beta testing, we created live prototypes on iPads and iPhones, and visited people with dementia and carers across the country. We invited people to use the prototype apps in the context of their daily lives. In the early phases this took place during the interviews. People with dementia and carers would scroll through the apps; we observed their interactions, and spoke with them about their thoughts on the app, and their daily experience of care more broadly.
In the later phases of research we gave people with dementia and carers the apps to use over longer periods of time (from two weeks to three months). During these research visits, over tea and biscuits, we spoke to the person with dementia and carer about their long term experience using the app, and continued to observe how they interacted with the app together with their loved ones in their homes. At each successive successive round of design and development the insights from these visits directly shaped the changes we made.
Throughout this process, we worked closely with our academic and project partners to bring their research needs into decisions about design and development, along with the insights from people with dementia and their carers in the contextual research. Balancing the expectations across these diverse groups brought up a range of questions: how to craft a scientifically validated study that’s also a good and ethical user experience? How to adapt core elements of biomedical research to the context of mobile phones? How to challenge assumptions around a vulnerable and marginalised group? We haven’t solved everything, but Dementia Citizens allowed us to explore these themes and we’ll continue to work through them in projects to come.