Available free online, the new book COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice is divided into two volumes: Volume 1, ‘The Challenges and Necessity of Co-production’, and Volume 2, ‘Co-production Methods and Working Together at a Distance’. The book was published in May, launched on 22 June 2021.
The ‘wide variety of voices… helps make the book more engaging and accessible’, while the ‘inequalities of power in healthcare systems are a central theme’, stated a review by the Co-production Collective. The book is ‘explosive and astonishing’, according to Clive Moore, a member of ARC South London’s public research panel.
Knowledge arising from diverse personal and collective experience – including that of community groups, local networks and teams of researchers and service user contributors confronting harsh realities – is one of the book’s strengths. The practical aspects of co-production and involvement are explored as well as the wider context and each chapter ends with tips on ‘What needs to be done’.
Our ARC’s equality, diversity and inclusion lead Dr Josephine Ocloo is an editor and author, while I contributed a chapter too. Josephine wrote on ‘Silenced voices, unequal impact: Addressing health inequities and discrimination in co-producing health and care during the pandemic and beyond.’ She explored how tackling racism and other forms of exclusion could be made more central to patient and public involvement and co-production, especially in research.
My chapter, written mainly in a personal capacity, was on ‘Whose views, and lives, truly count? The meaning of co-production against a background of worsening inequalities.’ I looked at how a background of deepening marginalisation and human rights abuses in wider society, even before the pandemic hit, affected possibilities for co-producing practice, policy and research.
A video of the launch, hosted by the Centre for Public Engagement at Kingston University and St George’s, University of London is on YouTube. While ‘co-production’ is often seen as going further than other forms of involvement in trying to ensure that power is shared equally, it became clear that this did not always happen in practice. However, when it did, it could make an important difference.
On behalf of the editors, Josephine introduced the book. She acknowledged that, in getting the book written and published so quickly in the midst of the pandemic, they had not been able to capture the experiences of all the groups which deserved to be heard, though more than 100 people contributed.
Ellen Clifford and Mark Dunk spoke about the startlingly high levels of deaths among disabled people during the pandemic due largely to socio-economic factors, political decisions and discrimination, with ‘violations of our right to life’. Lucy Allwright and Naima Iqbal, from Against Violence and Abuse, powerfully described the need for co-production with women with experience, when countering gender-based violence, which had surged. ‘Going remote: using technology to co-produce homeless health research’ was the focus of talks by Spike Hudson and Andy Guise.
Natalie Creary, from Black Thrive, which works on mental health, warned that ‘The intention to give voice, and to share power, doesn’t always materialise in reality.’ What counts as ‘co-production’ can sometimes be ‘extractive and exploitative’ of black people, with inadequate support, recognition and reward.
After a question-and-answer sessions, on behalf of the editors Meerat Kaur, from the NIHR Centre for Engagement and Dissemination, drew the session to a close. She mentioned the ‘real, tangible solutions’ which emerged in tackling inequalities and improving people’s lives.
The book is both explosive and astonishing… The way the book is set out is brilliant – a co-production, so not one opinion but many and of the people who have been directly affected, all set out in chapters that strike at the very heart of all that is wrong. It comes from all angles and left me reeling initially, outraged and then deeply saddened. I intend to read it again so I can absorb it fully
Clive added: ‘Let’s hope it is disseminated so that people can force change.’
COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice was edited by Peter Beresford, Michelle Farr, Gary Hickey, Meerat Kaur, Josephine Ocloo, Doreen Tembo and Oli Williams (in alphabetical order) and published by Policy Press, with funding from the Health Foundation so that it could be downloaded free of charge.