Navigating personal health budgets: research-led innovation
- September 2019: PhD research project started.
- September 2021: MyCareBudget wiki goes live.
- November 2021: Approached NHS Innovation Service for support.
- September 2022: Highly Commended in the ‘Excellence in Patient and Public Involvement in Transformation and Innovation’ category at the AHSN Network Innovate Awards.
A care home in your own home
Peter Glick is an unexpected innovator, building an online wiki as a result of his PhD studies. Now his platform, MyCareBudget, supports thousands of people in the UK and across the world, to manage their personal health budgets.
These are funds that are given to disabled people, or their parents or carers, to help meet high levels of care and support needs.
Peter explains, "The flexibility is great, but the processes you need to put in place can be extremely daunting. The budget allows people to set up their own support package, however the admin required is a challenge".
Peter began a conversation with Newcastle University, which offered him the opportunity to undertake a funded PhD, looking into what people needed to manage their personal health budgets.
A people-first solution
A common way of involving people is to create a website or app and then ask the users to road-test or review it. Peter says the problem with this approach, is you’ll simply end up moving things around or making other small, ultimately insignificant changes.
Peter says, "The best thing, if you’ve got the seed of an idea, is to involve people straight away. They will have the most interesting, unexpected and occasionally wacky ideas, but you’ll always be surprised by their insight. Get users involved from day one and let them run it".
Through interviews and workshops with groups of personal health budget users, he developed a community-led solution which has quickly grown. Launched in September 2021, the site gathered 4,500 users within the first year.
"The phrase you often hear is hard-to-reach when you talk about engaging people with a disability. They’re not, they’re seldom heard."
Encouraging further growth
While setting up the tech and engaging people with lived experience of care budgets has been relatively straightforward, Peter has struggled with the communications and marketing side: promoting the site to potential users, getting buy-in from local authorities and health authorities, and encouraging people to join.
He started looking for help and became aware of the new NHS Innovation Service. They connected Peter to his local Academic Health Science Network for North East and North Cumbria (NENC AHSN).
The AHSN gave him advice on communications, to help both promote the wiki and engage more Integrated Care Boards (ICBs) to signpost to the portal when they grant personal health budgets.
Co-creating the future
In keeping with the public-led approach, the platform includes a discussion forum on what they would like to see developed in future. Common suggestions include whether users could create an account to store their own personalised documents, and whether it can become a community. These are potential developments for the future.
NHS England’s Personalised Care Team is supportive of MyCareBudget, and the support of local authorities and health authorities is part of ongoing conversations.
Peter says, "If I were to go back and start this again, I would involve more organisations from the outset. Users were wary of involving ICBs (previously Clinical Commissioning Groups) in case it affected their budgets, but it would still have been helpful to have run a parallel workstream with ICBs".
Peter is due to complete his PhD in the summer of 2023, by which time the wiki will be transferred to the ownership of a Community Interest Company already involved in the project.
- Your users know far more than you do. Bring them in from the start, not to review what you’ve already developed.
- Build an open forum for your users to discuss their ideas with each other and let them fly.
- Co-creation is working with users to meet their needs; true co-production requires involvement from all of your stakeholders, e.g. ICBs and local authorities.
- It is important to give enough attention and time to communications and marketing – it can take more effort and resource than expected.