Date: 05 July 2018
Anne Rogers, Professor of Health Systems Implementation and director of the NIHR CLAHRC Wessex talks to VISION magazine about Genie, a facilitated web-based platform which allows patients living with long-term conditions to map their social networks.
"You’d be forgiven if you didn’t quite catch the jist of what my role entails through my job title – it’s quite complex.
"My work focusses on putting some of the wonderful research that takes place within the NHS and University, into tangible actions so that we can make changes happen. I help make connections between NIHR CLAHRC Wessex and local NHS organisations and partners. We undertake research and take research evidence and we’ll make a contribution by turning it into implementable innovations or informa service solutions that provide a patient-focussed solution.
"We’ve evaluated a lot of research that shows us patients who are better connected, and have a wider social network, rely less on NHS services.
"I’ve recently been working with others on the development of Genie, a facilitated web-based platform that allows patients living with long-term conditions to map their social networks (real life ones, not Facebook or Twitter!) and connect them with non-medical services or groups that can help them to live a better life.
"This has implications for reducing costs and enabling patients to connect to resources which help them engage with things that they value. Patients were telling us that they didn’t want more information, what they wanted was to connect with others and carry on doing the things they used to do. In essence, they wanted to manage their own health systems.
"Genie asks patients to do a simple analysis of the people (and animals!) close to them, and not so close, that they might see or come into contact with every week. From this, they can tell Genie the people, pets, groups and activities that are important to them and support them.
"We facilitate this process by equipping Health Visitors and Support Workers with iPads and laptops, so that they can introduce patients to the circle diagram that helps them to begin their mapping process. Once they’ve done this, they get a personalised plan that helps connect them to local organisations or groups that meet the needs they’ve said are important to them. If they’ve said how much they love walking, it will connect them to a local walking group where they can meet like-minded people and people with similar long-term illnesses.
"Our hope is that approaches like this will reduce the stigma surrounding long-term conditions and give people the tools they need to support living everyday life with a long term condition, which as a consequence might reduce reliance on NHS health systems.
"It can be easy for patients to feel their life has become smaller post-diagnosis, but our aim is to provide a means of thinking about reconnecting with things and activities that they value. An opportunity for change, a chance to re-evaluate what’s important and take action to invoke positive change.
"We are looking to the use of Genie expanding nationally and we’re also going to test its approach on people who are feeling lonely or isolated. This could mean refugees, older people, younger mums – we know that loneliness has an impact on people’s health and their reliance on services like the NHS, so we want to explore its value for other groups of society.
"The UK is a world leader in medical research, and the creation of the NIHR has had a huge impact on the cultural change of that research. Now it’s not just research scientists who are involved, but psychologists, applied social scientists, data analysts, health workers and patients themselves. The more multi-disciplinary it becomes, the greater capacity for understanding the outcomes for patients and for the NHS.
"Without this research, we wouldn’t be able to look for solutions. And without solutions, we wouldn’t be changing lives. At the moment I’m providing peer support to a number of talented researchers and can’t emphasise enough the importance of supporting them for the future. Encouraging researchers to apply for grants and getting them to lead on research is vital so that we can continue to draw out solutions and create benefit for patients.
"There’s an incredible amount of satisfaction to my job – taking research and seeing it come to life. For a long time, research was the unseen side to the NHS. But now it’s taking centre stage, and rightly so. The creation of organisations like Involve give research a public face – so people not only know why we’re doing the research but how they can get involved. Then through my work, they can see how that research goes on to make an impact.
"Bringing visibility to research has been a hugely positive step during the last 70 years of the NHS, keeping that going is vital so that we can continue to make a difference to people’s lives over the next 70 years."
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