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.
Peter Beresford, OBE is Visiting Professor at the University of East Anglia, Co-Chair of Shaping our Lives and Emeritus Professor at Brunel University London and Essex University.
Michelle Farr is a Research Fellow at the National Institute for Health Research (NIHR) Applied Research Collaboration West at the University of Bristol.
Gary Hickey is Senior Research Fellow in the Research Design Service South East at the University of Brighton and Senior Public Involvement Manager at the Wessex Institute at the University of Southampton.
Meerat Kaur is part of the Centre for Engagement and Dissemination at the National Institute for Health Research (NIHR), and an advisor on collaborative approaches for diverse statutory, and community and voluntary organisations.
Josephine Ocloo is a Senior Researcher and Diversity and Inclusion lead for the National Institute for Health Research (NIHR) Applied Research Collaboration, South London, based at the Centre for Implementation Science (CIS) at King’s College London.
Doreen Tembo is a Senior Research Manager at the UK National Institute for Health Research (NIHR) Evaluation Trials and Studies Coordinating Centre at the Wessex Institute at the University of Southampton.
Oli Williams is a Postdoctoral Research Fellow based at King’s College London and funded by the Health Foundation’s grant to the University of Cambridge for The Healthcare Improvement Studies (THIS) Institute.
Introduction ~ Peter Beresford, Michelle Farr, Gary Hickey, Meerat Kaur, Josephine Ocloo, Doreen Tembo and Oli Williams
Part I: Existing Structures
Co-producing in academia: cultural and organisational challenges ~ Sophie Staniszewska
A comparative analysis of the English and Scottish Responses to the COVID-19 Pandemic and the effects on patient organisations ~ Lian Najami
The challenges of increasing diversity and inclusion in health services research within existing structures: reflections from The Health Foundation ~ Usha Boolaky et al
Co-production and funding research in the context of a global health pandemic ~ Doreen Tembo and Gary Hickey
The uneven global histories of co-production and how this informed responses to the pandemic ~ Erica Harris
Perspectives from South America ~ Cristian R. Montenegro
Finding the voice of the people in the COVID-19 pandemic: ethnographic observations from Healthwatch ~ Amit Desai, Giulia Zoccatelli and Glenn Robert
The importance of stories: Community Voices from North West London on COVID-19 ~ Samira Ben Omar and Meerat Kaur et al
Disabled People Don’t Count – How a protected characteristic wasn’t when it came to official data collection (the failure of the ONS to collect statistics initially on deaths of disabled people) ~ TBC
What are we clapping for? Sending people to die in social care: why did the NHS do this? ~ Peter Beresford
Whose views, and lives, truly count? The meaning of co-production against a background of worsening inequalities ~ Savitri Hensman
Part II: Marginalised Voices
The pandemic and Black Lives Matter: life during lockdown for Black communities ~ Natalie Creary et al
‘For the good of all’: Provision of services by minority communities for underserved communities during COVID ~ Gurpreet Singh Anand or Randeep Singh et al
Realities of Welfare Reform Under Covid-19 Lockdown: what disabled and older people have actually been experiencing – report from a welfare rights worker, The Secret Welfare Rights Worker ~ anonymous
The importance of the Disabled News Service to tell pandemic truths and why is it so vulnerable? ~ John Pring
Chronic illness, COVID-19 and shielding ~ Verity Longley
Bursting the Bubble: people with learning difficulties speaking and acting for ourselves ~ TBC
Domestic abuse and lockdown ~ TBC
Where we were, where we were told to go and where we are going next: the experiences of people experiencing homelessness and the hit-and-miss nature of securing funds for collaboration ~ Andrew Guise
‘It's all right for you thinnies’: obesity, COVID-19 and the publication of an ‘empowering’ weight-loss policy during the pandemic ~ Fiona Quigley, Marita Hennessy, Oli Williams and Karen Throsby
Conclusion and critical reflections: co-producing research, policy and practice is more challenging and more important now ~ Peter Beresford, Michelle Farr, Gary Hickey, Meerat Kaur, Josephine Ocloo, Doreen Tembo and Oli Williams