Citizens Jury on Digital Health

By Lidis Garbovan, Patient and Public Involvement and Engagement (PPIE) Lead, South Yorkshire Digital Health Hub

The Jury members took part in three prior online sessions, where they e-met with and listened to presentations from public health, healthcare, academia and industry about the current status, concerns and challenges of digital healthcare in the context of health inequalities in South Yorkshire and the work of the Digital Health Hub.

The Jury was co-led and co-organised by the Public and Community Involvement & Engagement team of the Hub, led by Professor George Peat, and social researchers from Hopkins Van Mil. Two facilitators, event support, and four observers worked together to ensure the smooth running of the event from 10am to 3.30pm.

As one of the four observers, I found my job more challenging than expected: sitting in the middle of small groups comprised of the Jury members, listening to conversations, discussions and deliberations, and taking notes but not speaking at all was not always easy.

Perhaps this was a lesson on the important but difficult role of being silent in a room full of people who talk to each other. This observation was shared with the other observers in the room, and they felt a similar way, hence during tea and coffee breaks we took the chance to speak to each other and to share our thoughts. We also had the opportunity to share some of our observations with all the Jury members in the middle of the session and at the end of the day.

The facilitators did a great job of asking key and probing questions, taking notes both digitally and by hand and leading group discussions, using many useful tools such as menti.com, printed presentations and health data from the previous three online sessions, as well as charts and visual enablers for discussions.

The Jury members soon seemed comfortable being with each other physically in one room, having already met during online sessions. They shared initial thoughts during the ice-breaking session, such as answering the question ‘what would you be doing on a regular Saturday, if you were not here?’ with different answers depending on their daily or weekly schedules. They also shared their hopes for the outcome of the session and their views on what are the most important health challenges and opportunities in South Yorkshire and which ones should be prioritized in the work of the Digital Health Hub.

The conversations of the members were very rich, detailed and thoughtful, with reflections and considerations based on personal examples or challenges faced by communities in which they lived. For instance, as an observer, I learnt a little bit more about the recent history of the region and the impact of the structural and economic changes in the mid-1980s on some of the current health concerns in the region. I also noticed how interested some of the Jury members were in the question of health inequalities, and they wanted to know the underlying reasons for these but also how innovative technologies could help reduce them.

Some of the key principles that emerged from the discussions around digital healthcare innovations focused on the importance of data access and inclusion, with one recommendation stating: I should be able to look at my data and control who has access to it. Jury members also considered the importance of everyday healthcare decisions, and how these are embedded in the local and national infrastructure and resources.

This was very interesting for me to hear as a sociologist who connects the personal and structural factors: making decisions about one’s health is deeply interconnected with the available infrastructure and resources to enable such decisions, for instance, the social and economic environment where one lives, and the historical factors associated with it. Jury members also noted in their deliberations that digital technology should enhance existing NHS services and not replace people in healthcare – with another recommendation concluding: we don’t all want self-scanning checkouts.

The full list of principles and priorities recommended by the Jury is available here. We will be publishing a full report, including additional areas of interest and concern highlighted by the Jury, in the New Year.

At the end of the session as I walked in Town Hall Square in Sheffield on my way to the train station, I came across Christmas lights, decorations and stalls and many people out, talking and shopping. It felt nice and warm as I sat at one of the stalls to have some street food and enjoyed the view.

It also made me think about how the Jury members chose to spend their time on a Saturday – away from their regular activities or not being out and about in Town Hall Square – but dedicated the day to coming together with key principles and recommendations for the Digital Health Hub. And they also came with their Hopes: hope that digital health is helpful for everyone that needs it and hope that this research successfully guides the project and real tangible benefits result. I felt that I and the team at the Hub are now accountable to the people who gave their time and put their hopes in what we do, hopes earnestly expressed on a frosty Saturday in late November, at Victoria Hall in Sheffield.