Last week, NIHR HealthTech Research Centre Mental Health (MindTech), The Centre for Ethnic Health Research (CEHR), and community partners through the EXPAND project (EXPeriences of Accessing services and understanding Neurodevelopmental Disorders for ethnic minorities in England), hosted a community open day event at the African Caribbean Centre in Leicester.
The event aimed to take research beyond academic, university and healthcare settings and connect directly with communities, offering them a comfortable and open space to meet with researchers, ask questions about processes and learn about the fun studies they could get involved in.
Dr Camilla Babbage, Research Fellow for EXPAND and main event organiser said “We wanted to show communities who are so often not heard in research, that we are trying to learn how we can do things better. We thought the best way to start this would be by having a little bit of fun with different activities, and then telling people about the research we’re doing (if they want to hear about it!)”
The event showcased a variety of MindTech projects including; RECOGNeyes a computer game treatment for training better control over visual attention, VIBES a vibrating wrist device designed for helping young people with tics to manage their symptoms and Purrble an interactive fluffy friend designed to help regulate emotions. Another station hosted by colleagues from Nottingham Clinical Trials Unit (NCTU) developed a fun way to explain how clinical trials take place and asked attendees to map out how they feel about each stage of the trial journey, and MindTech's Lived Experience Access to Research Network (LEARN) hosted a stand to encourage attendees to express their interest in taking part in future research projects.
Alongside the research stations there were also creative activities for children and families to have fun whilst learning about mental health research, including making an ORBIT rocket, rangoli painting, paint your own emoji face and matching game connecting AI prompts to photographs.
Visitors were encouraged to explore every station through a treasure map activity, collecting stickers as they learned about the research on display. Once their sticker sheet was complete, they could swap it at the welcome station for a small toy or bag of sweets. The popularity of the activity was clear from the fact that no prizes remained by the end of the day, making it a fun and effective way to boost engagement across the event.
Our researchers had lots of fun and enjoyed building new connections with the public in a more relaxed environment. The open day was a massive success with almost 150 parents, carers and children attending across the day and feedback was overwhelmingly positive:
It's more important than ever to ensure access to research is open to participants from a variety of backgrounds. Recent research from MindTech and NCTU showed that 'ethnic minority groups are an underrepresented group in research, with over 75% of participants identified as White and this number rising to 85% in UK samples'.
Dr Charlote Hall, Lead Investigator for EXPAND reflected on the day “Perhaps the biggest takeaway for me was that communities are not "hard to reach"; too often, research is hard to reach. When we create welcoming spaces, build trust, and have genuine conversations, people are enthusiastic about engaging with research and contributing their perspectives....”
Watch the EXPAND animation below, which reflects on the experiences of ethnic minority parents seeking help and support for a child with neurodevelopmental conditions:
The animation highlights why it's crucial to break down barriers in healthcare settings and listen to peoples real life experiences to better care and support in the future.
A huge thank you to the EXPAND project team and the event organising team for organising such an engaging and interactive day.
Special thanks to the CEHR for partnering with MindTech and encouraging active and meaningful community engagement.
Thank you to the African Caribbean Centre, which is ran by volunteers, for hosting and supporting us throughout the day.
Thank you to the National Institute for Health and Care Research (NIHR) for funding and supporting the work we do at MindTech, #NIHR20.
Final thanks to everyone who attended on the day, for your enthusiasm and interest in the work that happens within research. We hope to hear more of your experiences and perspectives in our patient and public involvement work in the future!
Read the newly published paper from the EXPAND team, which is also postgraduate research support officer Sarah Cooper's first authored paper. Congratulations Sarah!
"Understanding inequities in accessing neurodevelopmental pathways: a multiple methods study investigating healthcare professionals’ views on access for minoritised ethnic families"
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