Imagine if research and industry genuinely understood our needs?

Hello! I’m Alex and I’m the Strategic Partnerships & Engagement Manager for VOICE and NICA. I’ve worked in a variety of citizen engagement roles for the last 5 years, which has resulted in a genuine passion for exploring and understanding the human experience; the nuances, life experiences, and personal narratives that define who we are.

What are our evolving needs and priorities as a society – the public, patients, and carers? And how can we ensure that research and industry respond to these needs in such a way that has the greatest possible effect on how long, and how well, we live? It was this question which led to the development of my Signature Story: The Imagine Series.

By identifying the unmet needs and main concerns of patients and carers, we can determine where the gaps are – with the ultimate aim of shaping priorities for research and innovation that are genuinely evidence-based and needs-led.

The Imagine Series is a collaborative programme led by VOICE, the NIHR Innovation Observatory – the UKs national horizon-scanning centre – and NICA.  It was born out of the idea that horizon scanning should not just be about mapping the research which is already occurring, or identifying what innovations are in the pipeline, it’s equally as important to identify what isn’t coming through that should be.

As Project Manager, I set about designing and delivering an Imagine project along with a crack team of Horizon Scanning Analysts and Evidence Synthesis Specialists.

The project focused on exploring the unmet needs and priorities of carers of people living with dementia with Lewy bodies (DLB).  By reviewing existing global research evidence, running deep-dive citizen insight workshops with carers, and combining this with world-class horizon scanning techniques, we were able to identify key unmet needs of carers not being addressed by research, and will not be overcome by innovations coming to market. This presents a unique opportunity for research and industry to develop solutions that can make a genuine difference to the lives of so many carers.

We were so grateful to have the opportunity to present the project findings at the International Lewy Body Dementia Conference in 2019, which just so happened to be in Las Vegas.

Well, it would have been rude to say no!