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Volume 2: Co-production Methods and Working Together at a Distance

EPDF and EPUB available Open Access under CC-BY-NC-ND licence. Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now being largely ignored in developing responses to it.

This two-volume set of Rapid Responses explores the urgent need to put co-production and participatory approaches at the heart of responses to the pandemic and demonstrates how policymakers, health and social care practitioners, patients, service users, carers and public contributors can make this happen.

The second volume focuses on methods and means of co-producing during a pandemic. It explores a variety of case studies from across the global North and South and addresses the practical considerations of co-producing knowledge both now - at a distance - and in the future when the pandemic is over.

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This contribution to Policy Press’s Rapid Responses series on the pandemic (https://bristoluniversitypress.co.uk/rapid-responses) is a practical book about the value and means of co-production. In this edited collection, we address how and why more collaborative, diverse, and inclusive responses could lessen the toll of this pandemic and future health emergencies, as well as challenge and improve ‘business as usual’ beyond the pandemic. It illustrates how and why this way of working can help to address the social wrongs we need to right: inequalities, discrimination, and marginalisation. The grave consequences of following the precedents set during this pandemic – in terms of morbidity, mortality, marginalisation, and wasteful ineffective policy – emphasise the urgency with which we must act to do things differently, to demonstrate why co-produced responses are required, and how policymakers, practitioners, service users, activists, communities, and citizens can make this happen both now and in the future. To achieve these aims this book has been divided into three parts over two volumes: (1) The impact of existing structures; (2) Infection and (increasing) marginalisation; (3) Working together at a distance: guidance and examples. Parts I and II have been addressed in Volume 1, which you can read here: https://policy.bristoluniversitypress.co.uk/covid-19-and-coproduction-in-health-and-social-care. Volume 2 is dedicated to addressing Part III. It does this by providing a series of international examples of how groups have co-produced during the COVID-19 pandemic in order to address issues relating to health and social care. Throughout this volume, contributors reflect on their pandemic co-production endeavours in relation to both pre- and post-pandemic times.

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The first of a two-volume set, this book explores the need to put co-production and participatory approaches at the heart of responses to the pandemic and demonstrates how to do this. It gives voice to a diversity of marginalised communities to illustrate how they have been affected and to demonstrate why co-produced responses are so important.

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The past decade or so has seen a greater push for more inclusive practice in the way research is developed and co-produced with patients and the public. The drivers have been a complex mixture of democratic right, increasing accountability, ensuring that research is meeting the needs of the people and communities it is trying to support, and the perceived positive impact on the quality of the research. Indeed there was an assertion that patient and public involvement and co-production (Hickey et al, 2018) were increasingly well established in the research process, from commissioning, through to designing, undertaking, and delivering research (INVOLVE, 2012) – although we should acknowledge that the practical implementation of co-production was limited even before COVID-19 (Green et al, 2019). And then came COVID-19.

The impact of COVID-19 on co-production, it is asserted here, can be characterised as an initial sidelining of patient and public involvement in research and the highlighting of existing health inequalities. This was followed by a reassertion of the importance of patient and public involvement. Included in this narrative are themes of the resilience of patient and public involvement and co-production and the embracing of digital responses to patient and public involvement and co-production. Indeed, we note here that, although digital exclusion is a genuine challenge, digital techniques also have the potential to increase reach and accessibility and assert that the ‘new normal’ will involve more digital working than hitherto, creating a new hybrid approach to public involvement in research.

In responding to COVID-19, governments and major funders of health and social care research swung into action, pausing and postponing some research and policy activity, and changing well-established processes and procedures as they prioritised responding to COVID-19 as quickly as possible.

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In the introduction to this volume, we outlined how the COVID-19 pandemic has highlighted the need to better understand and utilize co-produced responses to improve public policy, political responses, and health and social care research and practice. However, there are extensive constraining social structures that inhibit working in this way. The experiences of the most exposed, marginalised, and discriminated – in short, those who are systematically excluded in our societies – rarely directly influence the policies and practice that are ostensibly created for their protection. Crucially, given the disparities in the risk and outcomes of COVID-19, why are these people and communities not considered best placed to create and implement sought-after solutions for effective management, improvement, and research of pandemic responses?

Through this book, we wanted to:

  • explore how so many people are ignored, disempowered, and discriminated against in health and social care research, policy, and practice;

  • address how and why more collaborative, diverse, and inclusive responses could lessen the toll of this pandemic and future health emergencies, as well as more generally improve health and social care research, policy, and practice;

  • illustrate how and why collaborative ways of working can help to address the social wrongs and power imbalances that we need to right.

In particular, this volume set out to explore: (1) the impact of existing structures on ambitions and efforts to work in more participatory and collaborative ways in health and social care research, policy, and practice, and (2) how the pandemic has highlighted and exacerbated existing inequities and marginalisation both in practice and research. The collection has demonstrated through a diverse range of examples the impact of the pandemic on people’s lives and ways of working.

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In this edited collection, our aim was to illustrate the value and means of co-production or, more specifically, why it is valuable and how it can be done. It is worth noting that our starting point for achieving this aim was reflecting on who has been disproportionately disadvantaged by the pandemic and how discrimination, marginalisation, and exclusion increased their vulnerability to both the COVID-19 virus (in terms of mortality and morbidity) and the implications of responses to its spread (in terms of relative access to resources, support, and involvement in key decision-making processes in research, policy, and practice). Our attention then turned to how we could ensure this book became a platform for these people, groups, and communities to share their experiences, insights, and expertise. As was outlined in the introduction to this volume, co-production has over time been defined and conceptualised in different ways. What our ambition for this book reveals is that central to our conceptualisation and practice of co-production in health and social care research, policy, and practice is an egalitarian imperative. That is, our primary interest in and advocation for co-production is as a means to ensuring that collaborative endeavours that explicitly address inequities in power can support marginalised communities, citizens, patients, and services users to create, shape, and improve health and social care research, policy, and practice.

Collectively, co-production endeavours must actively seek to promote health equity, by addressing inequity, diversity, and exclusion, and recognise the significant role that the social determinants of health have in creating and perpetuating inequalities in health and access to care.

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The COVID-19 pandemic has drastically altered people’s lives. While pandemics have of course occurred before, for modern times COVID-19 has been unusually destructive and inhibitory in scale. However, what this pandemic shares with previous ones is having a disproportionately detrimental impact on people who were already disadvantaged by structural inequalities before the pandemic began (Bambra et al, 2020; Marmot et al, 2020). The virus has been particularly pervasive and destructive in its impact on Black, Asian, and minoritised ethnic groups; people of lower socioeconomic status; people in undervalued employment; people living in deprived areas, poor housing, and/or overcrowded accommodation; older people; disabled people; people with learning difficulties; people with psycho-social disabilities; and people with long term conditions – especially those who rely on social care. This has caused us to reflect on the relative strengths and weaknesses of approaches typically taken in modern politics and public policy in general, and health and social care specifically, as well as to consider alternatives that could better serve us in the future. For us, key among these alternative approaches is co-production.

Predictably, those most severely affected by COVID-19 are the people and groups who are now largely being ignored in developing responses to the pandemic and consequently are further detrimentally impacted by it – in many cases fatally. Co-production offers an alternative. It is consistent with efforts to challenge the exclusionary nature of much ideology underpinning health and social care policy and practice and to move to more inclusive and participatory approaches (Beresford, 2021).

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