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Volume 1: The Challenges and Necessity of Co-production

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 largely being 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 first volume investigates how, at the outset of the pandemic, the limits of existing structures severely undermined the potential of co-production. It also 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 both now during this pandemic and in the future.

Open access

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).

Open access

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.

Open access

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 (; ). 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.

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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.

Open access

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 () were increasingly well established in the research process, from commissioning, through to designing, undertaking, and delivering research () – although we should acknowledge that the practical implementation of co-production was limited even before COVID-19 (). 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.

Full Access
Open access