After the ‘quick fix’ responses COVID-19 has demanded, now we must listen to our communities to develop long-term solutions for their underlying health issues
In London, some of the conversations we have had with our communities about inequality, systemic injustice and racism have made for uncomfortable listening – but these points needed to be heard, and should inform any pandemic recovery health strategy
Leah de Souza-Thomas
For most of us, the immediate response to a crisis is to rush in with offers of help and support. Doing what we can to fix a problem quickly is the human thing to do. We see it on a global scale in natural and man-made disasters alike, with offers of medical supplies, food and clothing all gratefully received by the country or area in need.
But there are obvious concerns with ‘quick fixes’ because they are just that: a temporary solution that gets people over the hump of a troubled time until they are in a better situation. Quick fixes rarely have the capacity to address the underlying deep-rooted issues that pave the way for a problem to morph into a catastrophe.
When the SARS-CoV-2 virus emerged almost two years ago, there was an initial belief that this virus affected ‘prince and pauper alike’; that it was the ‘great leveller’. But for many people working in public health and beyond, we knew this was unlikely.
The writing was on the wall
There are always people who experience greater impacts – both direct and indirect – from disease and epidemics. The ability to work from home, absorb the costs of isolation and not be defined as a key worker were for many people (at least in the early days of the pandemic) the difference between being at risk of certain infection and staying safe.
Research reminds us that health is what happens outside of medical settings (see footnote 1), and that it’s the conditions in the places people live, learn, earn and play that affect a host of health and quality-of-life risks and outcomes. These socioeconomic and environmental conditions include living in food deserts (places where there is limited access to affordable, varied and nutritious food), air pollution levels, social relationships, and social conditions such as chronic stress, racism and discrimination. All these factors impact the development of conditions such as obesity, diabetes and cardiovascular disease (footnotes 2-9) – all of which increase the risk of serious illness and death from COVID-19.
The writing was on the wall, provided by decades of evidence. In London, when we spoke to our communities about the COVID vaccines, they reminded us of this. From a health system perspective, it made for uncomfortable listening – but it needed to be said, and we needed to hear it:
- ‘We know that the reasons behind the vulnerabilities for many of our communities are not really COVID … It’s really the inequalities and the years and years of neglect in terms of resourcing and supporting these communities.’ (East & South East Asian roundtable, June 2021)
- ‘We know you acknowledge racism, but what are you going to do about it?’ (East Asian webinar participant, March 2021)
- ‘The system is not set up for me.’ (Black female webinar participant aged 19, August 2021)
- ‘Members have been refused services because the GP didn’t have a translator’ … ‘In a choice between immigration status and health, immigration status wins.’ (Filipino roundtable, March 2021)
Drawing fresh insights from community engagement
Last winter, the operations team in Public Health England’s London region (for whom I work) began considering fresh responses to all that we were seeing and hearing. We had already leveraged some of our passionate and diverse staff to act as ‘cultural appropriateness tzars’ for PHE London products and activities, to propel our work addressing racism as a public health issue forward, and to join our Bureau of Speakers – health and public health experts who could be called upon to speak at public engagement events about COVID-19 vaccines. Now we needed to further ramp up our efforts.
We asked for insights and feedback from these engagement events and our many networks. We wanted to know what questions were coming up, what themes they were hearing, whether there were any unusual questions being asked, or myths being shared? Through this feedback, we learned about the nuances of low vaccine confidence among different community groups.
For example, during the early months of the NHS vaccination programme, many Eastern European people were less willing than their white British counterparts to offer their arms for vaccination, due to both cultural and historical concerns. These were individuals who often had little or no trust in government, and who found the English health system difficult to navigate (this ‘NHS roadmap’ video was created in response). It served as a reminder that when seeking to understand people’s behaviours and attitudes and to appropriately answer their questions, we should always consider their history and culture.
The London Community Champions Coordinators programme has offered further insights, bringing local people and services together to improve health and wellbeing while reducing inequalities. A recent (unpublished) paper from the group provided a rich picture of how our communities wanted to be communicated with. The paper found that for true partnership to happen between the health system and citizens, our institutions need to yield power and control. This could be achieved by communicating in a much less formalised manner, through new and unconventional (at least, for the health system) media and channels – allowing Londoners to ask questions when they want, rather than when the system decides it is convenient.
This is not an easy pill for the system to swallow. Adapting to change through flexibility and fresh collaborations is not the greatest strength of hierarchical, bureaucratic institutions. But in London, we’ve seen it is possible (see, for example, this case study) so we know it can be done.
Finally, we held community engagement roundtables with and without system partners. While the approach undertaken was not always perfect, these conversations allowed us to understand the context of the lives of Londoners disproportionately affected by COVID-19 and who regularly showed up in a range of inequalities statistics. The realities were stark and eye-opening even for someone like me from an ethnic minority background who is steeped in this work. It revealed the importance of working through an intersectional lens when addressing the needs of diverse groups, recognising that levels of marginalisation and power vary according to a range of individual characteristics including formal education, sexuality, neurodiversity, wealth, language, gender and citizenship.
So what do our communities want?
In all our conversations with community groups, it became clear that some game-changing solutions to both immediate and long-term system issues were achievable. But the unifying theme was the importance of focusing on the ‘how’ rather than the ‘what’ – to allay expectations that the system should have all the answers, while cementing hope for what is possible.
In particular, our communities said they wanted us to:
- Collaborate with them to address health inequalities – ask them for their ideas, work with them to develop plans and programmes, yield power in the dynamics of the collaboration, and share information through culturally and linguistically able people who could connect with traditionally underserved communities. This was shown to be beneficial during the vaccine roll-out.
- Rectify the unfairness of people affected by systemic injustices having to fix the issues themselves in their own time – by funding community- and faith-based organisations to do the work, and also giving them access to professionals.
- Use less-homogenised ethnicity data – to ensure there are more categories that accurately capture the ethnic makeup of our communities. (Just one example is the ‘White Other’ category, which can include a diverse range of ethnic groups such as Latin Americans, Antipodeans, Eastern Europeans, White Americans and Filipinos.)
- Understand the specific issues affecting each group – and provide appropriate messaging and opportunities to co-design and co-develop strategies to address their underlying health inequalities.
- Support the practice of embedding health professionals alongside Community Champions as independent voices who can be activated and nurtured to bridge their professional and community roles.
- Ensure the health system is equipped to deliver care to diverse groups of people – by providing patient-facing staff that are trained in cultural inclusion and trauma-informed care, ensuring that primary care staff know there is no requirement to provide proof of address or identity to register at a GP practice, and also that translations are provided throughout the patient pathway.
The COVID-19 crisis has necessitated that civil society and public sector organisations exceed and outstrip their typical response to the needs of their communities. However, this crisis response is not sustainable – it’s a quick fix. The only way to ensure an inclusive recovery and to enable underserved communities to be in a more resilient position against future threats is to work through an intersectional lens to tackle the structural causes of these health inequalities.
Leah de Souza-Thomas is a Regional Public Health Policy Lead for London on Pandemic Response at the Office for Health Improvement and Disparities (previously Public Health England)
Footnotes
- Canadian Institute of Advanced Research, Health Canada, Population and Public Health Branch. AB/NWT 2002, quoted in Kuznetsova, D. (2012) Healthy places: Councils leading on public health. London: New Local Government Network.
- Wang A, Kho AN, French DD. Association of the Robert Wood Johnson Foundations’ social determinants of health and Medicare hospitalisations for ischaemic strokes: a cross-sectional data analysis. Open Heart. 2020;7(1):e001189. doi:10.1136/openhrt-2019-001189
- Benjamin EJ, Muntner P, Alonso A, et al. Heart disease and stroke statistics—2019 update: a report from the American Heart Association. Circulation. 2019;139(10):e56-e528. doi:10.1161/CIR.0000000000000659
- Tan J, Wang Y. Social integration, social support, and all-cause, cardiovascular disease and cause-specific mortality: a prospective cohort study. Int J Environ Res Public Health. 2019;16(9):1498. doi:10.3390/ijerph16091498
- Nagata JM, Palar K, Gooding HC, Garber AK, Bibbins-Domingo K, Weiser SD. Food insecurity and chronic disease in US young adults: findings from the National Longitudinal Study of Adolescent to Adult Health. J Gen Intern Med. 2019;34(12):2756-2762. doi:10.1007/s11606-019-05317-8
- Suarez JJ, Isakova T, Anderson CA, Boulware LE, Wolf M, Scialla JJ. Food access, chronic kidney disease, and hypertension in the U.S. Am J Prev Med. 2015;49(6):912-920. doi:10.1016/j.amepre.2015.07.017
- Lee BJ, Kim B, Lee K. Air pollution exposure and cardiovascular disease. Toxicol Res. 2014;30(2):71-75. doi:10.5487/TR.2014.30.2.071
- Shaw KM, Theis KA, Self-Brown S, Roblin DW, Barker L. Chronic disease disparities by county economic status and metropolitan classification, behavioral risk factor surveillance system, 2013. Prev Chronic Dis. 2016;13:E119. doi:10.5888/pcd13.160088
- Troxel WM, Matthews KA, Bromberger JT, Sutton-Tyrrell K. Chronic stress burden, discrimination, and subclinical carotid artery disease in African American and Caucasian women. Health Psychol. 2003;22(3):300-309. doi:10.1037/0278-6133.22.3.300