Back in May 2023, we launched our partnership with community engagement agency Egality Health and eight community-based organisations, embarking on a campaign to improve representation in health research from diverse ethnic groups.
The 12-week project was split into four phases: awareness, interest, evaluation, and sign up, with a focus on engaging and onboarding a new wave of volunteers from underrepresented groups.
The campaign is part of a long-term BioResource-wide mission to improve representation in health research from people from diverse ethnic communities, specifically South Asian and Black, who are and historically have been disproportionately impacted by health inequalities in the UK.
Laying the foundations
Earlier this year, in February, Egality Health facilitated two workshops with the community organisation network to investigate the work of the NIHR BioResource: our history, objectives, materials we use to recruit new volunteers, our language, and more. Key themes identified from these discussions included systemic mistrust, data handling, and lack of translated communications. We used these to build the basis of the 4-part campaign, which consisted of the community organisations posting regular content across their social networks as well as engaging with their community locally at events.
The eight community organisations and where they are based:
- Black Health Initiative (BHI), Leeds
- Caribbean & African Health Network (CAHN), Manchester
- Chronically Brown, Birmingham
- Connected Voice, Newcastle
- Research Black, London
- Rotherham Ethnic Minority Alliance (REMA), Rotherham
- Social Action for Health (SAFH), London
- South Asian Health Action (SAHA), Leicester
Phase 1: Awareness
Aim – to introduce the partnership with NIHR BioResource to the community and explain what we aim to achieve with the partnership.
We recognised that people from diverse ethnic communities are disproportionately impacted by health inequalities but under-represented in health research. We wanted to change this and created this partnership to help make long-lasting change. The key focus of the collaboration was having community voices at its very core and a commitment to working together in order to make research inclusive.
To do this, we created videos featuring the community organisations – as well as ourselves – to address these concerns and why we at the BioResource are committed to improving representation from diverse communities in our work and the health research that we enable. We wanted to highlight that by participating in health research, you could contribute to studies on multiple health conditions and support the fair representation of diverse ethnic groups in healthcare. A single sample can help improve the lives of future generations!
Phase 2: Interest
Aim – to explain in more detail what the NIHR BioResource does and how it works.
We wanted to highlight what the NIHR BioResource actually does, how easy it is to become a volunteer, the impact of participating in research and how it will benefit communities, and the journey of our samples, i.e., what happens to it once it has been taken. To help amplify this message, we linked a lot of our content to awareness days, with World Blood Donor Day being a particular focus. We shared the message of how blood can be used for research - with just a few drops making a huge difference - and how it helps to drive important health research forward and why we need increasing representation from diverse ethnic communities.
Joining @NIHRBioResource is simple & safe.— NIHR BioResource (@NIHRBioResource) June 27, 2023
You can make a big impact with just 1 blood/saliva sample! 🩸🔬
Watch our film to know more about the volunteer experience. 🙋https://t.co/Tp5bFTBqIP#MakeResearchInclusive #inclusion #healthresearch #Diversity pic.twitter.com/vgfnB0Lf8d
Phase 3: Evaluation
Aim – to address areas of concern such as data protection and mistrusts of the health system.
In order for us to have real connection with these under-represented groups, there needed to be transparency around how NIHR BioResource keeps their data safe, and that the protection of data is a critical priority to the NIHR BioResource. It was recognised that historically the healthcare system has mistreated diverse ethnic communities, through misuse or violation of data, inhuman medical treatment, unethical research posing health risks, and discriminatory treatment, to name a few. Therefore, when it comes research, people are concerned about how their data is stored and used.
In our communications for this phase, we explained that the NIHR BioResource, samples and information donated by volunteers can be used for multiple studies and researchers applying to use this data (which is all encrypted and stored securely) are carefully vetted and approved.
We also raised these concerns with our audience on Twitter and LinkedIn to find out how they felt about health research and to get some feedback about data protection and safety. When we asked, “What’s the one research you feel hesitant towards participating in health research?”, the responses on Twitter were:
- 46% - don’t know enough about it
- 30% - too busy to participate
- 15% - mistrust
On LinkedIn, our audience responded:
- 67% - don’t know enough about it
- 33% - too busy to participate
We also asked our audience what information would help them understand more about health research before they participate. The general consensus on Twitter was:
- 67% - how does it help?
- 33% - is my data safe?
On LinkedIn, we had a 50/50 split between our audience wanting to know:
- 50% - what’s it used for?
- 50% - how does it help?
Phase 4: Sign up
Aim – to encourage members of communities to join the BioResource.
Highlighting the importance of our work was key to encouraging members of these diverse communities to join the BioResource. To showcase the simplicity of signing up (donating your time and blood), we worked with creative agency, Freshrb C.I.C., and the community organisations to put together three videos. One illustrated the step-by-step process of how to volunteer for the BioResource, and addressed how being part of the BioResource was a safe, positive experience, and why taking part in research is important and vital to help better represent under-served communities. The others were filmed at Leeds Teaching Hospitals NHS Trust featuring employees from LTHT, who shared their own experiences participating in health research as members of the Black and South Asian communities.
Reflecting on the campaign - social media
We had a total of 1257 page visits (to our Join Us page) and 19 Expression of Interest forms completed.
Our top three performing posts were:
- The launch video
- Influencer Dr. Joyce Omatseye, supporting Research Black, discusses sickle cell disease research and participation
- Dr. Sunil Daga discusses why having a diverse set of participants is important for health research
From this, we took away five key learnings:
- The most effective messaging and delivery comes from trusted expert voices in the community
- Video content yields the highest engagement, especially short bite-sized clips
- Sharing personal stories is powerful and therefore connects with the audience on a deeper level, which contributes to higher engagement
- Collaborative videos with influencers amplify the reach of our message on social media
- The coordinated content launch plan with the eight community organisations helped the campaign gain traction
Reflecting on the campaign - offline
Alongside social media, the community organisations actively attend events and engage with their local community face-to-face. Some of the events they attended, where they spoke to members of the public about the NIHR BioResource, were:
- Rath Yatra Leicester Festival
- Belgrave Neighbourhood Cooperative Housing Association Summer Fun Day
- Guru Purnima Festival
Commenting on the effectiveness of connecting with people in-person, Kirit Mistry from SAHA said:
"As Founder of SAHAUK and Lead for Health Inequalities we were happy to support NIHR BioResource to increase volunteers from South Asian communities.
"[In-person] outreach community engagement enabled more people to sign up and be better aware of how they can give a sample and where to go in the city [to donate].
"We also engaged with our WhatsApp group and our ambassadors produced and shared culturally appropriate and linguistic video messages in South Asian languages."
Reflection on the campaign from community organisation leaders
We asked the community organisations to tell us how they thought the campaign went, their thoughts for the future and for health research.
Vicki Harris, Health Equity and Involvement Manager at Connected Voice, said:
"Thanks to Egality and NIHR BioResource, we had lots of opportunities to learn about their work and ask lots of questions.
"We helped shape and inform how the engagement and communication plan was rolled out across all the partners.
"Everyone had an opportunity to input and share their experiences."
Naomi Awovemi from Research Black said:
"We from Research Black appreciate the opportunity to work alongside NIHR BioResource and Egality Health.
"Through open dialogue, we shared our experiences as a black-led organisation and helped shape an inclusive communication plan across all partners.
"Our input demonstrates the value of early collaboration with marginalised voices to build trust and increase community participation.
"We hope our ongoing involvement steers these efforts towards ethical inclusion, where no population feels excluded from the benefits of [health research] advancements."
The main takeaway
Overall, the main takeaway from this campaign, speaking to these communities, is that mistrust in of the healthcare system is the primary issue to address, specifically regarding breaking barriers to entry for research participation. Therefore, we plan to continue our work in breaking these barriers and ultimately reaching more under-represented groups.
Annette Crosse, Founder/CEO of Egality Health, reflects on the campaign:
"It’s been fantastic to see the commitment from NIHR BioResource to build long-lasting relationships with community organisations and deliver this truly collaborative project.
"However, this is just the start of the journey. We still operate in a health system that perpetuates health inequalities and a research sector that maintains systemic barriers to marginalised groups accessing research.
"We look forward to working with NIHR BioResource to be leaders for change in this regard.
"Through trailblazing long-term collaborations with community organisations and changing how we communicate about the benefits of research will help address the mistrust and the aversion towards it.
"We strongly believe in this mission of the BioResource to increase volunteer diversity and ultimately increase representation in research and tackle health inequalities across the UK!"
BHI – Heather’s passing during the campaign
Mid-way through the campaign, we were deeply saddened by the loss of Heather Nelson, CEO of the Black Health Initiative in Leeds. Described as a ‘true community warrior’, Heather made a positive difference in the lives of many, working tirelessly to improve equality of access to health and social care within Leeds and the surrounding areas for disadvantaged communities. Our prayers are with her family, friends, BHI colleagues and community.
Looking to the future
The NIHR BioResource will continue to carry out this very important work as we have embarked on a journey to creating an inclusive health research volunteer pool resource and fulfil our role in improving health inequalities. We are grateful to the community organisers who lent their insights and worked alongside us, and to Egality Health for leading our efforts. We look forward to collaborating with Egality Health on future projects, as well as working together with community organisations.
If you wish to support our projects or work with us on future campaigns, please don’t hesitate to email firstname.lastname@example.org.
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