MND Engage was a one-day collaborative event, bringing together MND researchers and people affected by MND. The inaugural event was held at the Francis Crick Institute in London on 23 July. The event, organised by researchers Jasmine Harley, Giulia Tyzack and Helen Divine, and supported by the MND Association’s Research Development and Communications teams, brought together MND researchers from several UK laboratories working on MND in order to explore ways in which public engagement in MND research could be improved.
The aim of the day was to mix research scientists together with people affected by MND to collaboratively produce an engaging short video that provided an answer to an MND research question that had been submitted by the general public. Working together would provide an opportunity for researchers to understand the challenges and importance of explaining MND research in an engaging way for a public audience. Creating the short videos under time pressure was a lot of fun and much was learned, while at the same time relationships were forged between researchers and people affected by MND.
Based on the feedback we received previously on the way people prefer to receive information, videos were preferred by the majority due to their ability to convey a lot of information in different formats. They also have the additional benefit of being accessible to people with limited mobility and the added advantage of being available to watch on demand.
What we did
We were given some training on the ‘dos and don’ts’ of effectively communicating information through video from Peter Barker of Orinoco Communications. We also heard from John, who is living with MND, who gave us a moving insight into his day-to-day life and his perception of research engagement. After his diagnosis, John’s granddaughter told him ‘Don’t let this disease define you!’, a mantra he tries to live by every day. We would like to thank John for his truly inspirational talk.
We then split into groups of researchers, people affected by MND and MND Association staff and were let loose with our mobile phones, laptops, VideoScribe and Movani software. A couple of hours later, and with equal measures of head-scratching and laughter, several videos were produced – with varying degrees of success! These were short, entertaining and packed with concise and easy to understand information on a variety of MND-related topics. An ‘Oscar’ was presented by Sally Light, CEO of the MND Association, for the best video, bringing this wonderful day to a close.
The event was made possible through funding from a Crick Partnership Networking Fund award and a grant award from the MND Association.
A snapshot of the day
The day produced some really positive feedback together with some ideas on how to improve future events, as well as strengthening networks and collaborations. This has inspired us to make this an annual event.
Some of the videos are available on YouTube and you can vote for your favourite by clicking the ‘thumbs up – I like this’ icon.
Photo credit: HB Photography