Case study: Recognising Black History Month in the North West Coast

October is Black History Month and the Network has taken the opportunity to celebrate diversity and at the same time understand how we can build stronger links with local communities and thereby deliver research that serves our communities better. We have engaged with Dorcas O. Akeju, OBE, who was the Lead for Equality and Diversity for the Liverpool Women’s Hospital for 4 years and is a Public Adviser at Applied Research Collaboration,  North West Coast (ARC NWC) and Grace Oyewale, Learning and Development Administrator, Clinical Research Network North West Coast, about why it is important to recognise Black History Month within health and care research and why research is important in the Black community.

Dorcas: “Black History month is important because of what it means from a personal perspective and within society. To me, Black History Month is about celebration of the African diaspora and our ‘root' where we came from. Celebrating our culture and tradition, the contributions and achievements of our black brothers and sisters.”

“In relation to Research, why are black people not involved in research? Is it because of the perception that they are ‘hard to reach’ or researchers not engaging with them? The issues of common barriers such as distrust, provider perceptions, biases, prejudices surrounding medical decision-making dictate the lower number of minority participants in trials and research.”

“It is about engaging the ethnic minority population to encourage them to participate. Minority participation in clinical trials is an important topic in public health discussions because this representation touches on issues of equality and the elimination of disparities, which are core values of the field.”

“In conclusion, the literature on distrust, poor access, and other barriers to participation needs to be re-examined. Research that promotes a more accurate understanding of minority participation in clinical trials has significant public health implications because it relates to efforts to eliminate disparities and achieve equality through clinical research.”

Grace: “Created by Carter Woodson, Black History Month is the month where black people are celebrated, especially those who have made a difference. It was originally created to draw people’s attention to the contributions of African Americans to the US, in the UK, Black History Month has celebrated African, Caribbean contributions and more recently, Asian communities.”

“To me, it is a month that reminds us of the contribution of the black people to the development of the UK amid racism and oppression, a month where we can focus on the positives of the black culture. It is a month that brings to the fore the importance of equal rights, a month where we can reflect on our differences, respect them, acknowledge the strengths in them and celebrate them.”

“Health research involves investigating a particular ailment and the form of treatment that will work best for it; it tries to eliminate just speculating what treatments to use for illnesses. Health research involves researchers, medical personnel, patients, and the community as a whole.”

“Health research is very important as it provides vital information about an ailment, for instance the cause, the risk factors, disease trends etc, for knowledge purposes and to deliver high quality care. Diseases and illnesses could also be prevented through health research. Through the years, with health research, there have been so many significant findings which have led to the improvement of the healthcare system, consequently impacting the economy positively. Embedding research in our community gives patients wider treatment options. The recent COVID-19 research, and outcome is an important example of how important the impact of research is to any community.”

“Although health research had not been widely embraced in the ‘black’ community due to mistrust based on past histories and experiences, a lot of us now know that the possibility of getting newer and better treatments for ailments associated with our community will be higher if we participated.”

Earlier this year, the Network also recognised Equality, Diversity & Human Rights Week which takes place annually between Monday 10th and Friday 14th May. The NHS’s annual Equality, Diversity and Human Rights Week (#EQW2021) is a national platform for organisations to highlight their work to create a fairer and more inclusive NHS for patients and staff. The celebration provides an opportunity to promote, showcase and celebrate the amazing work going on across the health and social care sector around the areas of equality, diversity and inclusion. Tracy Gore, Chair of Liverpool's Race Equality Task Force, spoke to us about the importance of research being inclusive to all ethnic minority people, watch full clip here.

We also spoke with Phil Walker, Metastatic Breast Cancer Clinical Nurse Specialist, Clatterbridge Cancer Centre, about the Core20PLUS5  programme. Core20PLUS5 is a national NHS England and NHS Improvement approach to support the reduction of health inequalities at both national and system level. The approach defines a target population cohort – the ‘Core20PLUS’ – and identifies ‘5’ focus clinical areas requiring accelerated improvement. This has also been included in our latest Annual Plan.  Watch Phil’s full clip here.

It remains vital and only when organisations gain that level of understanding and appreciation of the challenges and barriers faced by underrepresented communities, will research get to a whole new level. 

Are you a community leader who would like to understand how research can deliver health benefits for your community? 

Please contact Sayeda Khatun, Patient, Public and Engagement Lead, Clinical Research Network: North West Coast via email on sayeda.khatun@nihr.ac.uk.