“Diverse Voices” A UCL Community Engagement Project on diversity in health research participation

This blog is written by Shoba Poduval (Clinical lecturer) & Chandrika Kaviraj (Expert by Experience).

Shoba Poduval (project lead):

We have known for some time that people from ethnic minority backgrounds suffer from poorer health outcomes, but are less likely to be included in health and social care research studies (1). The Covid-19 pandemic has exacerbated inequalities and multiple studies have shown that people from ethnic minority backgrounds have an increased risk of infection, Intensive Therapy Unit (ITU) admission, and death (2-4).

These data plus the fact that two thirds of my NHS colleagues who lost their lives to Covid-19 were from ethnic minority backgrounds (5) has had a profound impact on me, which has resonated every time I have completed a Covid-19 workplace risk assessment that has scored me at higher risk than my white counterparts due to my ethnicity. We often talk about research impact, but rarely does it cause us to reflect not only on our own personal identities, but also our professional commitment to diversity and inclusion. My idea for this project was borne out of a need to explore this and my sense of connection to the communities affected by these issues. “You have to use your privilege and your strength to make a difference, otherwise it’s worth nothing.” (Asma Khan, leading female chef, entrepreneur and activist).

I knew that in order to be accessible and generate rich discussions, the project required imagination and innovation, beyond the methods traditionally used in academia. I therefore worked with Kois Miah, a photographer based in east London specialising primarily on projects that combine photography with community participation for social change. We successfully gained UCL Community Engagement seed funding (https://www.ucl.ac.uk/ucl-east/news/2021/jul/community-engagement-seed-fund-2021-grants-announced) to collaborate with members of east London’s diverse communities in online workshops sharing our experiences of illness, healthcare, and Covid-19. We used visual storytelling through images created with smartphone cameras.

 

The photos generated by participants formed a catalyst for discussion in co-design workshops to address barriers to engagement with research. Professional portraits taken by Kois supplemented the participant-generated works.

 

Chandrika Kaviraj (project participant):

This project was unique in that it combined listening and photography to discover insights. It was by far the best health research and health engagement project I have taken part in. And yes, I’ve been on a few.

The individuals gained photography skills and tapped into potential we didn’t know we possessed. We expressed ourselves creatively and through discussions as a group, when we hadn’t been listened to before. People often turn their noses up at a therapeutic approach but this did so in a subtle yet powerful way. We felt confident sharing our life experiences and our passions in 2021.  It was slap bang in the middle of the Covid-19 pandemic. We were made to feel comfortable because Shoba and Kois shared of themselves first.

As a carer, although I am vocal and advocate loudly for my elderly parents, I hide behind that aspect of my life.  There are some carers who feel invisible but we also feel vulnerable.  Added to that, being a woman of colour – many assumptions are made. Dealing with this, as well as assumptions made about the people I care for, with immigrant backgrounds has been challenging and “Diverse Voices” gave me the space to express it verbally and creatively.

Chandrika and Shoba (along with the rest of the “Diverse Voices” team) have the following recommendations for those of you who wish to engage participants from different backgrounds:

1. Seek out unique and creative ways to encourage collaboration- drawing and photography are examples of accessible ways of doing this which don’t require language skills or general/IT literacy;
2. How will participants benefit from being involved? The funding criteria for this project was two-way exchange of knowledge and skills. This can be applied to research approaches also. Acknowledge your participants’ investment in your project’s aims and objectives. This doesn’t just mean financial compensation through vouchers, but also offers of training and opportunities to engage at every stage and with other projects of interest.
3. Respect participants’ lived experience and the value and insight this brings to your work;
4. Consider the impact of your work not just in terms of scientific publications and presentations but also engaging with communities to discuss how change can be brought about “on the ground”.

Final words from Chandrika:

“This outstanding project allowed each participant to explore our experiences and feelings, not just about Covid-19 but the health systems we encounter on a daily basis. With “Diverse Voices”, I feel I have been encouraged and allowed to express, been inspired to be creative and have hopefully, found a way to make changes in health and social care research. I have made six potential collaborations in future projects, but also wonderful friends, I hope, for life.”

This project is dedicated to those fighting the systemic inequalities that lead to the alienation of many people, not just due to their race, but also gender, disability, and wealth.

““Be the change you want to see in the world” is one my favourite quotes and something I’m trying to live by. If we can look at music and culture in the same way, people won’t be told “you can’t do that”, they will chase bigger dreams and be free to express themselves how they want. The arts can be the most powerful vehicle for change and should be respected as such.” (Jamal Edwards, pioneer music entrepreneur and philanthropist).

 

With many thanks to:

Kois Miah & the “Diverse Voices” team

Briony Fleming, Sam Wilkinson, Jordan Abankwah and the UCL Public Engagement/UCL East teams

Jeshma Mehta, Bijal Parmar & the UCL research administrators

Niccola Hutchinson & the Co-Production Collective

The Bloomsbury Theatre

Karen Hubbard, Rebecca Chester & The Brady Art Gallery

Raheel Nabi, Phil Mason & UCL Media

Further information:

The images (as well as a recording of the private view with panel discussions) will be shared online (details TBC) and represent a legacy by and for east London’s ethnic minority communities.

REFERENCES

1. Treweek S, Forouhi NG, Narayan KMV, Khunti K. COVID-19 and ethnicity: who will research results apply to? The Lancet. 2020;395(10242):1955-7.https://doi.org/10.1016/S0140-6736(20)31380-5
2. Sze S, Pan D, Nevill CR, Gray LJ, Martin CA, Nazareth J, et al. Ethnicity and clinical outcomes in COVID-19: A systematic review and meta-analysis. EClinicalMedicine. 2020;29-30:100630.https://doi.org/10.1016/j.eclinm.2020.100630
3. Williamson EJ, Walker AJ, Bhaskaran K, Bacon S, Bates C, Morton CE, et al. Factors associated with COVID-19-related death using OpenSAFELY. Nature. 2020;584(7821):430-6.10.1038/s41586-020-2521-4
4. Public Health England. Beyond the data: Understanding the impact of COVID-19 on BAME groups. 2020.
5. Rimmer A. Covid-19: Two thirds of healthcare workers who have died were from ethnic minorities. BMJ. 2020;369:m1621.10.1136/bmj.m1621