This week I experienced the extremes of digital expertise and digital exclusion, and it crystallised in my mind the enormous gap between them.
From conversations with informatics experts about big data, through to conversations with clinicians about the challenges of mobile phone access for people with chaotic lives, I was struck by how far apart these two groups are and wondered what conversations could bring them closer together – because if digital is going to make a really positive difference to people accessing health services, it has to be solidly grounded in their experiences as well as what they need and what they want.
To begin with the experts – the launch of the Leeds Health Innovation Lab brought together mobile app developers and big data analysts as well as IT specialists and many others. The lab offers a new open platform with a variety of different data sets against which people can develop and test out digital solutions. I furiously scribbled down words such as openEHR, skunkworks, archetypes and APIs with a note to self to go home and make sense of it all later. We had a small group discussion about how to keep the patient or citizen at the heart of the lab and I was struck by the challenge of bridging such specific expert knowledge to people not already immersed in the technology and vice versa.
In stark contrast, I also spent time with our Assertive Outreach Team which supports the most vulnerable people, who often do not want to have any contact with services at all. People who use the service experience unusual thoughts or beliefs that are often described as psychosis and many are subject to Community Treatment Orders. I was moved by the caring and creative quality of the team and heard about their efforts to build supportive relationships with people who are incredibly excluded.
It is a challenge to think about the role of digital for a group of people who are less likely than many to own a mobile phone – access to the technology is the first basic obstacle. People using the service and practitioners have their own valuable expertise that developers and designers need to understand if they are going to produce digital assets which meet their needs. The alternative is that we increase the digital divide and further exclude people who are already disadvantaged.
We have devised a way of bringing people together in our #DigiHealthLab (which I have described in a previous post) and I’m really pleased that a team of people accessing and working in the Assertive Outreach team are going to get involved.
So how do we connect the knowledge, expertise and experiences of such different people together to create value? I’m confident there is no one simple answer. I’m also clear that there needs to be a shared commitment and energy to make it happen within the Leeds Innovation Health Hub.
One approach to connecting people is to bring them together for a conversation and the challenge is finding a way to do this so that many different people can contribute. We had a go at achieving this at #DigitalMH13 which also took place this week. Fifty or so people came together to talk about digital innovation in mental health – people accessing services, volunteers and nurses through to charities, developers and health consultants, from students through to retired people – it was a rich and varied mix. You can find a storify of the tweets here.
The open space format meant that the agenda for the day was set by the participants and learning came from the shared expertise in the room. And guess what was the most repeated conversation was during the day? Yep you guessed it – digital exclusion. I was particularly struck by my conversation with David, who runs a ‘digital age’ group at his local church for older people, and I wondered what other similar conversations are happening in the city and how we might connect with them and support each other to have a bigger impact than we can achieve on our own.
The way forward?
My sense is we need layer upon layer of conversation with lots of different people and in lots of different spaces. I’m increasingly interested in the idea of testing out a system of digital buddies who can go to people where they are and help them think about digital – taking tablets to wards, care homes and drop in centres, finding out what people are passionate about, and then finding out how digital can help. I’m going to be doing a lot of work in this area over the next year and would love to hear thoughts about how we can connect digital experts and digitally excluded people together in our city.