Overview
D-CYPHR is a national campaign led by NIHR BioResource to increase participation of children and young people (aged 0-15 years) in health research. Our DNA can help decode some of the most pressing health challenges we face, yet most research begins only in adulthood. D-CYPHR aimed to change this by supporting research involving children, enabling pioneering treatments and contributing to better care both now and into adulthood.
Egality worked with NIHR BioResource and the D-CYPHR team to strengthen recruitment and engagement among children, young people, and families from diverse ethnic communities. We partnered with three community organisations in Leeds, Manchester, and Leicester to support culturally sensitive, community-led involvement.
Campaign activities
Egality collaborated with NIHR BioResource and community partners to deliver:
- A collaborative communications campaign developed and delivered with three community organisations over eight months, including social media content, in-person events, and ongoing PPIE contributions
- Consistent PPIE activities, gathering community perspectives on messaging, language, branding, and visuals through workshops facilitated with our community partners
- Three user-testing focus groups with 15 members of the public to assess website usability, clarity of documents, accessibility of language, and the overall sign-up journey
- Grassroots in-person outreach, bringing D-CYPHR directly into communities through local events to raise awareness, build trust, and sustain engagement alongside community organisations
- A spoken-word music video, produced in partnership with Alidor Gaspar (A Star Music UK), a spoken word artist, sickle-cell advocate, and founder of the Hidden Pain Society, encouraging families to get involved
- Partnerships with influential community members such as Shan and Dr Triya, to share messages and drive awareness among parents within their communities
Outcomes
We reported a direct increase in participation from diverse populations linked to our campaign activities:
- Increased Expressions of Interest from 7.6% to 12.4%
- Increased participant consents from 12.4% to 15.41%
- Increased number of consents from 565 to 1100+, representing a significant uplift in diverse participants
This was a direct result of our campaign activities and effectively engaging outputs such as:
- 20+ community-led videos created in 4 languages English, Gujarati, Urdu and Bangla, featuring community members, leaders, healthcare professionals, and influencers
- 10+ in-person community events delivered, including festivals, health markets, churches, and school programmes
- 8+ month-long diverse social media campaign including videos, photos, and influencer partnerships
These outcomes demonstrated how culturally grounded, community-driven engagement helped build trust, increase visibility, and strengthen participation in national health research among underrepresented groups.
