Here at the CLAHRC Wessex we have been using and developing an interactive tool called GENIE . This is designed to engage and link people with long-term health conditions to social activities and support they value and find useful.
We have been working on the Isle of Wight with the My Life a Full Life team and other organisations to see how we can integrate GENIE as part of day-to-day support for people. Last week we had our first meeting, after months of using the system there to work towards making GENIE ‘Business as Usual’.
But what does that mean?
There are several things to look at, and key questions. First of all, what would it look like for GENIE to be part of normal practice? Who would use it and why? What work would need to be done and who would do it?
One of the things we looked into at this first meeting was: Should GENIE could be a stand-alone website for people to dip into to find local activities of interest to them? Yes it’s possible, but as researchers, we feel that the main value of GENIE is using it with someone to guide and support you. Mapping a person’s social network is a way to get a visual picture of the level of support and help people have, where it’s fragile or where there may be gaps. Health trainers and care navigators on the island have found it useful in establishing a relationship with the people they work with.
Should GPs or nurses could use GENIE with their patients? Many in the discussion group said yes – but there was also a recognition that this could be hard to do in practice. It was thought that maybe Health care assistants could be facilitators. GENIE was felt to be useful in a number of roles – for people with mental health conditions and those receiving end of life care, for both connecting to and getting support can be hard.
One practical issue is how to make sure the data on local organisations is kept up-to-date, truly local and properly tailored to individual need? Some concerns can be solved by the software. But who should have access to the database and be able to update it or use the data generated? It’s recognised that information is needed by commissioners about what’s available to people, and where there is a lack of support. But these are still important questions to overcome.
Once GENIE becomes used widely it will have to prove its worth to commissioners – the people with the money to buy services. There will be costs involved – keeping the database up to date and training facilitators. We need to be able to explain the costs and benefits of GENIE.
There’s still lots to think about and decisions to be made, but GENIE has excited and enthused many people and we hope to expand its use throughout Wessex CLAHRC over the coming year as part of our ambitious programme of getting evidence of what works for patients into practice.