Submitted 7 April 2022.
This response to the COVID-19 inquiry draft terms of reference consultation is based on evidence drawn from a meta-analysis and ethics review of pandemic impact research, which has been jointly commissioned by the UK Pandemic Ethics Accelerator and Pandemic & Beyond, two UKRI/AHRC funded initiatives. The review is intended for submission to the UK COVID-19 inquiry and draws on evidence from 26 out of 77 research projects funded by the Arts and Humanities Research Council (AHRC) as part of the UKRI’s emergency call, all of which are represented under the Pandemic & Beyond umbrella. These initiatives are pioneered by upwards of 325 researchers in multidisciplinary teams, representing collaborations from 39 different universities, cultural institutions, think tanks, and research agencies. They examine and assess impacts of the public health crisis and government interventions, ranging from the design and use of public health technologies; the scope and impact of government guidance and messaging; the employment of legal frameworks; governance; healthcare delivery; the cultural sector and creative industries; as well as the lived experiences of workers, marginalised or vulnerable people, and front-line healthcare professionals.
Response to the draft terms:
Please explain why you think the draft Terms of Reference do not cover all the areas that the Inquiry should address.
The remit to examine the “COVID-19 response” only for what “lessons” can “inform the UK’s preparation for future pandemics” falls short of addressing the pandemic’s detrimental and critical impacts. All evidence incorporated in the review reinforces the importance of examining the COVID-19 pandemic as a “syndemic” (Horton 2020) – the disease has transmitted through, reinforced, and starkly illuminated, pre-existing structural and social inequalities in the UK. The response to COVID-19 cannot be examined separately from these issues.
Recommendation: The inquiry does not have the ability to solve these problems, but it can and should act to set an ethical agenda for UK policy moving forward by formally recognising the way that pandemic-related harms interlock with longer-standing social and structural harms.
This response examines shortcomings in the proposed draft terms via two categories:
- Omissions: areas where substantial harms or impacts identified by research projects in the Pandemic & Beyond portfolio are clearly not encompassed by the proposed terms.
- Ambiguities: categories where substantial harms or impacts identified by researchers might be included, but which are not clearly encompassed by the categorical terms.
Omissions
- Democratic governance. Three projects (Good Governance, CRVO, Lex-Atlas) directly addressed the conduct of the executive, and/or examined the conduct or implementation of pandemic governance and found substantial concerns. Another eight projects raise points relating to the degradation of democratic governance through failures of transparency and disregard of public trust, as well as examining the implications of new partnerships in governance between the state, public sector institutions, and private/third sectors created or extended by the pandemic (e.g., Mutual Aid).
- Human Rights. Five projects (Care Homes, Good Governance, Lex-Atlas, CRVO, OMDDAC) have highlighted how the pandemic response has circumvented or avoided proper consideration of human rights principles and protections, in areas ranging from legislative conduct, processes of parliamentary scrutiny, the design and deployment of public health technologies, to care home management. If human rights are not a focus of the inquiry it is likely that wider insidious harms to human rights will be obscured.
- International Solidarity. Two projects (Equitable Vaccines, Good Governance) highlight the failures of international cooperation and the UK Government’s responsibilities from its existing international legal commitments to support fair vaccine access and initiatives. The harms to international solidarity, and the role of the UK government therein, should be examined by the inquiry because they resulted from pandemic policy, and impacted on the pandemic’s domestic course.
- Data-driven decision making. The UK Government’s Data Strategy is clearly informed by the experiences of the pandemic. COVID-19 impact projects have appraised digital innovations and data-driven thinking across governmental contexts, as well as in areas, such as the public libraries, and cultural sector, where digital infrastructures are financed by public money. Much of this research highlights negative or ambivalent effects of digital innovations (e.g., New Normal, Online harms, OMDDAC). The pandemic experience has important implications for future investments in digital infrastructures as well as the data strategy.
Recommendations:
- Include democratic governance under the terms of the review.
- Human Rights protections should be a focus for the inquiry.
- Recognise International Solidarity as an important domestic issue.
- Encompass new insights on data-driven decision making.
Ambiguities
- The Language of “Protected characteristics”: The inquiry has promised to “consider any disparities evident in the impact of the pandemic and the state’s response including those relating to protected characteristics under the Equality Act 2010”.
Discussion: Technically, this would include a range of groups or communities identified by the Pandemic & Beyond portfolio as suffering discrimination because of the pandemic or government interventions, such as children and young people, ethnic minorities, and cultural-language communities. However, the terms of the inquiry (expressed in clause 1) are focused on social and economic zones; they are not people-centred. Projects from the meta-analysis have highlighted instances of where vague, or overly technical and complex language in guidance excluded marginalised communities.
Risks: There is a substantial risk that the reluctance to name specific groups or communities in order not to prejudge or accidentally exclude some groups may unintentionally exclude those who the inquiry has vowed to protect because they do not see themselves as “protected characteristics”. Research projects in this review note particularly the harms to children and young people, ethnic minorities, and the vulnerable, disabled and elderly.
Recommendation: Use inclusive and people-centred terminology in framing the terms of inquiry because this will be the basis of all future messaging in relation to the inquiry itself.
- Workforces. The inquiry’s suggested terms encompass the impacts of the pandemic, and health interventions on “health and care sector workers, and other key workers during the pandemic”.
Discussion. These terms would invite consideration of the harms experienced by key workers, such as healthcare and educational professionals, which have been highlighted by many projects in the review (e.g., Nursing Narratives, Online harms, Stay at Home Stories). However, the Pandemic & Beyond portfolio also highlights how the social restrictions, new working practices, and government responses impacted on workers across the cultural sector and creative industries (e.g., Culture in Crisis). It might have been the inquiry’s intention to include these experiences within various other categories of the draft terms, such as in “the closure and re-opening of the hospitality sector, retail, sport and leisure sectors, and cultural institutions” or as part of the “economic response to the pandemic”. However, this is not clear and the draft terms are implicitly weighted towards economic and business interests in the way they are framed.
Risks. There is a risk that important workforce impacts, which have relevance for future investments in welfare planning, funding administration and education or skills support programmes, will be lost.
Recommendation. Specify in clear and categorical language that understanding the impacts of the pandemic’s various health and economic interventions on the UK workforce across a range of sectors is within the scope of the review.
Experience, Hardship and Suffering
Q. How should the Inquiry be designed and run to ensure that bereaved people or those who have suffered serious harm or hardship as a result of the pandemic have their voices heard?
The inquiry has promised to “listen to the experiences of bereaved families and others who have suffered hardship or loss as part of the pandemic” but has recognised its limitations and that it “will not investigate individual cases of harm or death in detail.”
Discussion. The question of how to draw “lessons” from individual experiences, when not all can be heard, is particularly difficult. Whilst we expect the inquiry to draw on testimony from a wide range of community representatives, charity and non-governmental organisations, faith networks, or other grass roots networks, the inquiry will also have to collate existing evidence regarding the experiences of people who have suffered hardship and loss and determine where supplemental information is necessary to address experiences of hardship and loss. The research within the Pandemic & Beyond portfolio draws on a wide range of research into first-hand personal experiences of bereaved people, families, and communities. They conducted research through partnerships with grass roots organisations and other stakeholder groups and used a variety of tools designed to empower individuals and communities to contribute their perspectives to research, including surveys and focus groups; deliberative research and citizen juries; interviews and auto-ethnographic research (e.g., participants recording pandemic diaries), and co-creative and participatory methods (e.g., action research).
Risks: There is a risk that the inquiry may not be effective in its determination to include experiences of loss and suffering. The potential research labour involved in the inquiry is substantial and it is not clear if the inquiry has the skills or resources to take proper and considered account of individual or community level experiences. The Pandemic & Beyond research demonstrates that a range of qualitative methods are critical for analysing and understanding lived experience and that partnerships with grass roots and community networks are intrinsic to inclusive research practice. Yet the research in the portfolio has highlighted that the use of qualitative skills cannot be guaranteed in pandemic decision making (e.g., OMDDAC) and that public health engagement initiatives have not used appropriate expertise to connect with communities (E.g., Cultural Translation, Co-design).
Recommendations:
- Recognise that the inquiry has a substantial task ahead and should be properly equipped and resourced with the appropriate skills to fulfil its objectives to allow individuals and communities who have suffered to have their voices heard.
- Collate existing evidence from existing UKRI-funded impact projects to provide a rigorous baseline of evidence upon which the inquiry can build.
- Establish a network of experts and specialists, from UK universities and communities, to advise on outreach, public engagement, and the process of hearing and the submission of testimony to ensure an inclusive and ethical practice.
We include a select list of projects with a focus on lived experiences of the pandemic. Further information can be found at https://pandemicandbeyond.exeter.ac.uk or follow us on @PandemicBeyond.
- Bereavement rituals during the COVID-19 pandemic
- Reset ethics: Supporting Maternity care and Paediatrics in the COVID-19 pandemic
- Stay Home Stories: Rethinking the Domestic in the COVID-19 pandemic
- British Ritual Innovation under COVID-19
- Human Rights in Care Homes
- Co-design and Implement a COVID-19 vaccine uptake intervention with Chinese communities in England.
- Cultural Translation and Interpreting of Risks among London’s Migrant Communities.
References
Horton, Richard. 2020. ‘Offline: COVID-19 is not a pandemic’, The Lancet 396, September 26.
Dr Eleanor O’Keeffe is working on the meta analysis and ethics review of pandemic impact research to submit to the inquiry, based on selected projects from the Pandemic & Beyond portfolio. The work is commissioned by the UK Pandemic Ethics Accelerator and Pandemic & Beyond.
