Kaye Stevens – Care Information Manager, Motor Neurone Disease Association
What is your current role and what do you enjoy about it?
Within a small team, I help develop information for people with or affected by motor neurone disease (MND), or Kennedy’s disease. We have over 70 resources, including sheets, guides and digital formats. The team also maintains another extensive provision for health and social care professionals.
In my previous role, I worked as an educator in the prison sector and learnt a great deal. However, despite having rehabilitation in mind, the environment was also about enforcement. The MND Association is very much a nurturing environment, where every work stream is focused on how to enable others. When I joined, it felt like an amazing opportunity, and still does, to both develop skills as a health information specialist, and help make a difference.
As time has gone on, I’ve also had chances to collaborate across teams and with other organisations. This has included shared projects and work on standards or process, which I enjoy too. I always feel a little guilty telling people how much I love my work, as it rests on such a challenging disease, but it’s so engrossing that time flashes past. I never end a day without a sense of purpose for the next.
What is the key area you are working on at the moment?
We need to take the content we already have and make it more accessible, to reach and inform more people. Our audiences have told us they want more online ability, which is important with the physical impairments they experience. This has meant collaborating with our Digital team on their redevelopment of our website as a central platform. The new site is relaunching soon and we’ve also been exploring animations, audio, e-readable resources and online decision tools. So digital formats are high on the agenda, and exciting too.
My favourite project at the moment is the development of a new interactive hub for children aged 4 to 10. This is being designed to help them adjust to the often rapid change when someone close has MND. This approach feels very new for us and it’s a visual treat. We hope to launch before the summer.
What’s your biggest health information challenge?
Our top level team mission is to ensure that all those we support can get the information they need, when they need it and in the format that they need. We’re working hard towards this goal, but as with most charities, we have limitations on resource and budget. Things also change very quickly. External reforms and disease progression set real challenges for us, both in staging and updating information.
I’m going to sneak one more in here, as it’s linked in a way. We part fund MND care centres and networks across England, Wales and Northern Ireland, and collaborate with their multidisciplinary teams. Yet reaching wider specialists and GPs with our information is no simple task. Getting resources to our audiences, at point of need, can be very difficult. We hope that PIF’s work in this area will help encourage better ways for professionals to access quality patient information.
What’s the best bit about working in health information?
Without any hesitation – it’s working with our target audiences! Their suggestions and critiques are a gift. There is always more resonance for others when real experience is shared. When I first started, it felt uncomfortable to ask for their help – aren’t they’re facing enough challenges already? I soon let go of this bias, as it became clear how much they want to have a voice – and it’s their choice to make, not ours. Besides, once you dive in and get started with a user group, you’re soon working as a team and it can be really exhilarating.
Our reviewers are more and more involved in co-production now, and it never fails to improve the output. We’re working harder to measure the outcomes and impact too.
Why did you join PIF?
To be honest, at first it was to get the discounted rate so our team could all attend an event! How cheeky is that? But in retrospect, we’d also seen some of the detailed reports and guides from PIF, which we felt were excellent. I’d used the PIF guide on writing for children and young people, and found it so helpful. I think membership was inevitable, as we were tapping into your resources more and more.
What do you find useful about being a PIF member?
The events and gatherings are a fantastic way to hear other viewpoints and share knowledge, but also for personal development as information specialists. There is so much to be harnessed from other approaches and we find this invaluable. However, on a more frequent basis, the online newsletter is brilliant. We find this an amazing source, not just for news, but for supporting evidence too. Genuinely useful and everyone in the team looks forward to these.
What top tip do you have to share on health information?
I loved Ben’s tip from November 2018 (Ben Colman, Information Services Manager at Salford Royal NHS Foundation Trust) – he said to ask yourself ‘would it work for my mum/dad/grandparent…?’ What a great way of standing back and identifying with a resource in the way a reader would! I have used this since – thanks Ben.
On similar lines, a communication manager once told me that if I had something complicated to get across, imagine explaining it out loud to an eight year old. If you do this, you instinctively pull out the main points and break it down so that most people are going to understand. It will then be easier to write for your own target audience, as appropriate. This one has stopped me going around in circles many a time.
What was your lightbulb moment in healthcare?
Seeing the facts and figures around literacy and health literacy for the UK adult population. It’s a bit of a shock to realise nearly half may have literacy levels below GCSE and more than half with numeracy. I have approached information development very differently since then. I pass this on whenever I can, especially when stressing the need for plain English. You can see the lightbulb switch on in other reactions to this too.