An interview with Starworks – #BePartofResearch
Starworks is a young people’s prosthetic research collaboration bringing children and their families together with key opinion leaders from the NHS, industry, clinical academia and leading national research centres with capabilities in child prosthetics.
Hosted by Devices for Dignity (D4D), Starworks aims to increase research collaboration in order to accelerate the translation of new inventions and developments in child prosthetics into everyday use.
As part of the NIHR #BePartofResearch campaign, we spoke to Nathaniel Mills, Abigail Needham and Dr Gemma Wheeler from the Starworks team about the importance of working with children and their families in research.
“Starworks was built on the D4D methodology of putting people at the centre of innovation. We worked with Lab4Living (Sheffield Hallam University) from the early days of establishing the network to place children and their families at the core of all research and innovation activity – we wanted to create new ideas by understanding their point of view.
We felt this was particularly important when exploring innovation in child health prosthetics as this is a relatively small community of people in this country. Experiences can also be vastly different – for some children or young people limb loss may have been due to illness or injury, others may have had a congenital condition. All experiences are valued and need to be part of the innovation process.
It’s been a great experience to work in collaboration with LimbPower They have been invaluable in supporting families to get involved in research and providing the support they need. We think this collaboration has been important in building trust to keep working together – we show our children and families that we are actively listening to what they tell us by maintaining communication.
It’s not been easy during 2020 to continue with our projects due to Covid-19, but we have an amazing network of children and young people who tell us they love to be involved and to be asked the questions about what matters to them – and to be given the time to participate.
We are also really excited to have launched our Starworks Ambassadors programme. We’ve reached out on social media and had a great response. We wanted to find a way to thank and recognise participation in Ambassador Activities – including online surveys, competitions, feedback on existing inventions, and workshops.
In terms of outcomes – we feel that all Starworks collaborators have gained something from working together. Children and families have told us they enjoy meeting other families and sharing their experiences; industry partners have really valued working with future users of their innovations and their involvement in the creative process; we have an exciting portfolio of prosthetics projects, and we were awarded Starworks follow-on funding from the National Institute for Health Research (NIHR) thanks to the network helping to develop our future work package activity.”
“As a family with a limb different child using prosthesis we have benefitted greatly from the Starworks programme. The exciting family focus groups and sandpits gave us a chance to meet professionals but more importantly feel heard. It was interesting to find out about the advances in technology and what may be available for our children as they grow up. The Starworks Ambassador initiative has been proactive and helped us to feel part of decisions that are being made both for children today and in the future. It’s been great to meet the team at various events over the years and we hope that Starworks continues for the benefit of all families” – Carly Bauert (Mum to Ollie 14)
If you’d like to find out more about Starworks, visit https://www.starworks-innovation.org.uk/
NIHR Devices for Dignity MedTech Co-operative
Sheffield Teaching Hospitals NHS
D33, Royal Hallamshire Hospital
0114 271 2159