Developing public engagement and co-design skills with health-data researchers

This is a training and development activity to provide early-career Health-data researchers with experience of co-design and public engagement skills, in collaboration with a multidisciplinary team across the University of Edinburgh. The project, funded by the ISSF, was embedded within a live case study on a rural island community in the Atlantic Fringes, and explored engagement in collaboration with communities via co-design activities. The setting was within an event space designed to bring people and technology together – ‘Tiree Techwave’ (Autumn –2022). Specifically, co-design techniques were used to understand community members’ informal networks of care and to encourage out Health-data researchers to carefully think about ways in which community members’ perspectives can be foregrounded in their research. The activity was driven by staff members in the Advanced Care Research Centre (ACRC) with experience in training, co-design and participant workshops, including experience in rural settings. The experience was open to UoE early-career researchers from any school with an interest in co-design and care in later life or a related field. 

Due to the inter-disciplinary nature of participants the case study work directly influenced and spanned across multiple areas of research. For example, specific to ACRC, by developing our understanding of the role technology could have in rural communities to support care, directly feeds into the research areas of Understanding the Person in Context and New Technologies of Care and will directly influence how ACRC thinks about New Models of Care. 

The scientific case 

To improve patients’ lives, Health data research must engage in a meaningful way with patients to understand what improvement looks like. A core Co-Design principle is that the end users of a service, technology or design are experts in their own lived experience, and thus, should participate in designing research and services for themselves. 

Unfortunately, public engagement and collaboration is frequently far removed from the day-to-day work of Health-data research, which is often focused on data, methods, prototyping devices, and data modelling. Health-data researchers receive little training in how to engage the people they are researching, even though it is crucial for their post-doctoral career to be able to use collaborative approaches such as co-design, social science perspectives, and Patient and Public Involvement and Engagement (PPIE). This project is designed to run within the space of the Tiree Techwave. This is an event that has been run by Prof Alan Dix for over 10 years on Tiree, Inner Hebrides. Its aim is to create a space to explore how technology and people come together. The Techwave is well supported by the local community who are very positive about engaging with attendees. This context brings the issue of rurality and care to the fore, challenging our researchers to think about how their work can benefit people whose lived experience is very different to their own. This will ensure deep thinking on their part on how to engage with diverse communities, communicating about their research, while listening to and foregrounding public insights and perspectives. This valuable experience will develop our Health-data researchers’ skills at an early stage of their career, enabling them to understand how to put co-design and public engagement into focus in their research, particularly with under-represented groups. This training and development will support their career development, future funding applications and approach to public involvement and engagement, and ultimately will lead to better and more relevant research outcomes and greater impact from the research they undertake.