Opens in a new tab

Inclusive PPIE and Recruitment for D-CYPHR (by NIHR BioResource)

Engaging and recruiting children and young people from Black, African, Caribbean, and South Asian communities for a national research programme

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.

“Working with Egality Health over the last 3 years, most recently on D-CYPHR, has been an incredibly rewarding experience. Their expertise in engaging minority ethnic communities in health research is second to none, and the Egality team bring a wealth of understanding and innovative strategies to this important yet often overlooked area of research engagement.

Their approach to community engagement is based on strong relationships with existing community partners, who we now consider close ‘critical friends’, fostering trust and collaboration between the BioResource and the project stakeholders.

We have seen a clear trend towards greater participation in our programme from Black and South Asian families as a direct result of the co-produced and co-delivered communications campaign that had Egality at the helm. Highly recommend working with Egality Health if you are serious about designing and delivering impactful, culturally sensitive, and inclusive research programmes with and for underserved populations.”

Dr Nathalie Kingston
Director, NIHR BioResource

Read more case studies

Global Patient Councils to Inform Pre-clinical Trial Decision Making in Endometriosis​

To understand patient unmet needs and inform target patient value proposition​
Read the case study

Using Storytelling to Improve Awareness and Recruitment for IBHO BioResource​

To use culturally grounded storytelling and engage Black communities effectively​ across the UK
Read the case study

Improving Access to Blood Cancer Trials for Black & Pakistani communities

Developing communications materials to improve engagement in blood cancer clinical trials for Blood Cancer UK and a top-10 pharmaceutical company
Read the case study