Effective engagement and involvement with community stakeholders in the co-production of global health research

This article argues that rather than trying to determine one encompassing definition of the concept, several different types of coproduction can be distinguished. Recognizing different types of coproduction more systematically is a critical step in making research on this phenomenon more comparable and more cumulative.

This paper surveys the history of an alternative view of value creation to that associated with industrial production. It argues that technical breakthroughs and social innovations in actual value creation render the alternative—a value co-production framework—ever more pertinent.

This paper reports on setting up a training programme for lay assessors. It describes a way of working that embodies a regional, cross-organisational approach to co-producing training with members of the public.

This article outlines how co-production might be understood as a utopian method, which both attends to and works against dominant inequalities. It suggests that it might be positioned ‘within, against, and beyond’ current configurations of power in academia and society more broadly. It develops this argument by drawing on recent research funded through the UK’s Connected Communities programme.

The aim of this study was to identify a key set of principles and recommendations for co-creating public health interventions. These recommendations aim to help the co-creation of public health interventions by providing a framework and governance to guide the process.

An essential first step to advancing public participation in health is to put it in the context of developing modern democracy more generally. This article seeks to do this by identifying four key stages in the development of public participation in health and social care.

Independent inquiry considering the future for civil society, examines the environment in which civil society operates, the many pressures and changes it faces, and engaged groups, networks, organisations and individuals to develop a shared understanding of what the future might hold, and the role of civil society in shaping it.

Using ethnographic data with four applied health research projects, we explored how everyday rituals generate and sustain inclusivity. Informed by interactional ritual change theory, we identify two types of interlinked inclusivity: relational, individuals routinely engaging together; and emotional, the feeling of being included.

This report tells the stories of people who are improving public services by working with the people who use them and delivering public services in a radically different way. These examples have at their heart equal and reciprocal relationships between professionals, people using services, their families and neighbours – an approach known as ​‘co-production’.

Selection of academic papers from the the co-production knowledge base of the Welsh Network for Co-production.

'A Glass Half-full' offers a fresh perspective on how to reduce inequalities in community health and wellbeing. It proposes assessing and building on the strengths and resources in a community to increase resilience and social capital, and develop better ways of delivering health outcomes.

This briefing is based on a systematic review of joint decision-making. Joint decision-making initiatives can increase wellbeing in a number of ways, when looking at interventions such as community involvement in urban renewal projects, co-production in public services and participatory budgeting.

Stakeholders across the public sector, industry, academia and civil society expect demonstrable impacts and to be engaged in the co-creation and coproduction of socially robust knowledge. This Working Paper explores the question: ‘What is research impact in the humanities and social sciences (SSH) and how might we measure, accelerate and stimulate it?’

This report is part of Work Package 2 in the ACCOMPLISSH project. It includes the results and conclusions from 14 focus group interviews with quadruple helix partners in 12 countries. Having considered, planned and worked with quadruple helix collaboration and co-creation in the fields of Social Sciences and the Humanities (SSH), the authors of the report can come with the following recommendations.

This working paper draws on the experiences and knowledge of the participants of the ACCOMPLISSH dialogue platform and represents a consolidation of our shared learning so far, just over one year on. It contains examples of practice across Europe and aims to assist Universities in strategic planning and the practical steps they need to take to create the conditions that can encourage societal impact via co-creation.

The Position Paper 10 by the Social Care Institute for Excellence (SCIE) shows how through an integrated way of working the participation of people from seldom-heard groups can be enabled.

This paper explores the meaning of co-production and the benefits it can bring to public services. The paper also diagnoses why public service reform is stalled, and why a radically new approach - sharing the design and delivery of services with users - can break this logjam and make services more effective for the public, more cost-effective for policymakers, and more sustainable for all of us.

Although co-production is recommended when involving people in research, methods for involving people are usually designed and managed by researchers and there is little evidence about methods to co-produce models for effective public and patient involvement. We report the method used by a group of patient and carer service users to develop and implement a model for involving public members in research.

Coproduction with people and communities needs to be part of a radical change in healthcare leadership and management, away from doing things ‘to’ or even ‘for’ people and towards a new model of leading ‘with’ others, putting people and neighbourhoods at the heart of a new systems leadership, focussing on what really matters.

The importance of including members of the public has been accorded a significant position in health planning, service delivery and research. But this position masks a lack of clarity about terms that are used. This paper identifies terms that are in common use in the lexicon of community based involvement and engagement in health with the intention of clarifying meaning and thus reducing ambiguity.

The Co-Production Star brings citizen power into public services to improve outcomes. The toolkit enables organisations commissioning and delivering public services and their local communities to map how much co-production is already taking place, improve existing co-production approaches, identify the potential for new approaches and scale out co-production across services and communities.

This comprehensive research in the UK to investigate how ‘co-production’ captures and develops the vital contribution people outside paid work make to their neighbourhoods. In keeping with the concept of co-production, people outside paid work in each of the local communities received training enabling them to work as researchers on the project.

This paper moves the discussion to a practical level, proposing actions that can be taken to implement evidence successfully in complex systems. Key to success is working with, rather than trying to simplify or control, complexity. The integrated actions relate to co-producing knowledge, establishing shared goals and measures, enabling leadership, ensuring adequate resourcing, contributing to the science of knowledge-to-action, and communicating strategically.

Paper exploring power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship.

Paper about service coproduction, elucidating the behaviors through which customers strive toward adherence. It integrates services and medical perspectives to develop a novel theoretical framework of adherence as a nested system of coproduction behaviors, characterized by temporal and scope dimensions, utilizing a qualitative approach.

Editorial about mental health services in England, arguing that co-production needs to be seen in mental health as part of that long-run debate about what a mental health care system should be like that I discussed in the introduction.

This paper develops a critique of the current model of research governance ethics which casts communities as vulnerable subjects. It uses the insights of coproduction as a way of positively rethinking the relationship between researchers and ‘the researched’ to create new ways of thinking about public value.

An editorial about new collection highlights the role of co-production in strengthening health systems.

An illustrative case study examining what the theory of co-production adds to understanding of processes of knowledge creation and translation we observed in one of the Collaborations for Leadership in Applied Health Research and Care.

This paper summarises a CGAP roundtable discussion held on the 2nd of November 2011 at Cass Business School, London, as part of the 9th ESRC Festival of Social Science. The event brought together academics and third sector practitioners to share their experiences of co-producing research and to consider the benefits and challenges that joint academic-voluntary sector research presents to both sides.

Fundamental principles of participatory research, such as democratic-theory considerations, the concept of "safe space," participation issues, and ethical questions. The article also focuses on practical research considerations regarding the role and tasks of the various participants; specific methodological approaches; and quality criteria—understood here in the sense of arguments justifying a participatory approach.

A prospective study across five European countries, (the Netherlands, Spain, Hungary, Germany and the UK), showing how even well-planned engagement activities can be diverted within the existing research funding and research production systems where non-research stakeholders remain at the margins and can even be seen as a threat to academic identify and autonomy.

Designed to generate conversation, ideas and debate with people who coproduce regularly as well as providing an easy access starting point for those looking to learn. It was produced in collaboration with NHS England and coproduced with a team of amazing people from across the country.

A toolkit for co-production with young people for use by Wolverhampton service providers, commissioners and schools.

Great ideas and inspiring stories about communities, collaboration and co-production.

A step-by-step guide that will get you solving problems like a designer, including 57 clear-to-use design methods for new and experienced practitioners, and from-the-field case studies of human-centered design in action.

Drawing on the expertise of 36 co-production practitioners in the field of sustainability research, the blog article presents a new working definition of co-produced research and suggests how different elements of successfully co-produced knowledge can be understood and evaluated.

A toolkit exploring what co-design is and how you can assess the outcomes of your co-design and the quality of your processes, and how to review and learn from the data. A five-stage process offers a roadmap for planning and implementing your co-design, with tips and tools for each of the five stages.

Co-produced research making the case for the value of co-production for individuals, communities, organisations, and society

The Housing LIN champions a variety of community-led approaches to housing for an ageing population. In line with this, they have published a range of materials to raise awareness and showcase latest practice. This online Directory seeks to enhance understanding and inspire local groups to co-produce innovative approaches to determine what might work in their community. It specifically builds on the Housing LIN’s concept of ‘CollaborAGE’.

As part of a recent research project, Voices of Colour wanted to ensure that the report and materials that they designed were representative of the Women of Colour that they have supported and that represent those that work within the sector. As a result of that, they created open-source icons that you can access and use as part of your projects, presentations etc.

During 2021-2022, the NIHR Clinical Research Network piloted a community engagement model in three local areas across England. The aim of the programme was to understand how the Clinical Research Network could build better relationships with communities that are currently under-served by health and care research, and increase their access to health and care research opportunities. This document provides a full evaluation report of the pilot programme activities, the pilot’s impact, and the important lessons learned.

During 2021-2022, the NIHR Clinical Research Network piloted a community engagement model in three local areas across England. The aim of the programme was to understand how the Clinical Research Network could build better relationships with communities that are currently under-served by health and care research, and increase their access to health and care research opportunities. This document provides a summary of the pilot programme activities, and gives an overview of the pilot’s impact, and the important lessons learned.

The authors of this paper outline that Patient and public involvement (PPI) in research has evolved over recent years, yet it often remains an ‘optional extra’ and, in some cases, tokenistic. Discussions are often focused on processes and methods, and are yet to make Patient and public involvement the norm; the authors argue that the conversation needs to change to one of ‘value’: a culture of common values and principles across all types of research.

This document provides a map of practical resources that can help when co-producing research in health and social care. It was produced as part of a project thinking about the challenges of doing co-production in health and social care research and is a guide for researchers, members of the public and health and social care practitioners.

The article examines the constraints that exist when trying to share power, informed by multidisciplinary theories of power. To bring co-production principles into practice, changes are needed within research practices, cultures and structures; in understandings of what knowledge is and how different forms of knowledge are valued. The article outlines challenges and tensions when co-producing research and describes potential ideas and resources that may help to put co-production principles into practice.

This special issue derives from a workshop at the Center for British Studies at the University of California, Berkeley in April 2017. The papers form part of a special issue about co-production from the Social Policy & Administration journal.

The special issue chapter of ‘Inside co-production: Ruling, resistance, and practice' (edited by Bevir et al. in Social Policy & Administration, 2019 - also available in this library) called for a ‘decentring of co-production’ by focusing attention on elite narratives, local traditions and resistance, and meaningful practices. The authors of this paper continue the analysis of these themes by highlighting what they view as important distinctions between co-production and Patient and Public Involvement (PPI) in applied health research.

The articles in the special issue (of which this chapter is part of) offer critical accounts of co-production in a range of policy domains, setting the elite narratives alongside local traditions and practices of resistance. For full chapter list search 'Special Issue: Inside Co-production'.

Shaping Our Lives produces research and reports into involving diverse communities in policy, planning and delivery of services. This is their catalogue of resources, dating back to 1996. You can sort or search the resources by name, date of publication or type of report.

A video sharing what the SISCODE Project Europe was all about. Also see 'SISCODE Project: Resources' in this library for further information and resources.

Resources from SISCODE, a three-year project aiming to understand the co-creation phenomenon that is flourishing in Europe (in fab labs, living labs, social innovations, smart cities, communities and regions) and to analyse the context and conditions that support its effective introduction, scalability and replication.

The author writes in this blog about the fact that they feel, people of color need their own spaces, black people need their own spaces. The author outlines the importance of - places in which we can gather and be free from the mainstream stereotypes and marginalization that permeate every other societal space we occupy.

In this blog Kelsey shares the deep sensitivity they feel as they move about their world—a vulnerability, a brewing sadness, that comes, they believe, from the rawness of beginning to peel back the layers and peer into the depths of their own internalized oppression.

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.

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.

We facilitated the co-production of a book review about co-production. The book is 'COVID-19 and Co-production in Health and Social Care Research, Policy and Practice Volume 1 and Volume 2' (also available in this resource library), it 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.

As part of the development of Co-Production Collective (formerly known as UCL Centre for Co-Production), we funded two phases of co-production pilots to co-produce a health research or innovation project. The aim of this work was to test and learn about co-production by supporting teams to co-produce in practice. This reports outlines what these projects were about.

A series of resources published by Lankelly Chase.

This paper aims to provide the basis for both a better understanding and a stronger evidence base for co-production. Given the current diversity of uses of the term, this paper also explains what coproduction isn’t. It demonstrates why, properly understood, co-production looks set to create the most important revolution in public services since the Beveridge Report in 1942.

This tool states that: it helps practitioners to review their own practice in relation to the following key components of co-production: assets, capacity, mutuality, networks, shared roles, catalysts

This paper explores the development of a novel co-produced methodology to understand ‘real-world’ help-seeking in online peer-peer communities by young people experiencing emotional abuse and neglect.

This co-produced research explored the experiences of young people seeking help for emotional abuse and neglect via an online, peer-peer message board. This practical case study aims to evidence the meaningful role and impacts associated with young co-researchers involvement in sensitive and complex mental health research using a flexible approach to co-production.

This Toolkit provides tools, activities, and ideas which researchers, project workers, and others working with young people can use and adapt to support the children and young people with whom they plan and undertake a research project and/or collaborate with adults on research and evaluation projects. The accompanying Guidance document 'Young Researchers: Guidance' provides background information and an overview of why and how to provide inclusive, good quality, and consistent training and support to young researchers of varying ages, interests, and needs.

This Guidance was commissioned to provide Barnardo’s researchers, project workers and others with clear guidance to use when supporting children and young people from a diverse range of backgrounds to be young researchers.

This blog article represents years of research by the author, inquiry, and guidance from elders and friends, culminating in a synthesis of historical insight into the relationship between racism, capitalism, and the creation of a socially constructed identity that would divest multiple ethnic groups of their inherited traditions and re-make them as “white.” The White Awake blog also contains other useful blogs.

A series of blogs and other resources from US based organisation Everyday Feminism.

A paper exploring what would it take to meaningfully attend to ethnicity and race in health research. The learning shared is from a trial intervention development study.

A blog about why language is important and why the author is moving away from the terms ‘allyship’ and ‘privilege’ in their work.

The purpose of this paper is to describe an experiment in research co-production in an evaluation of service planning at a London Mental Health NHS Trust. The paper aims to consider whether members of the research team who have themselves been users of mental health services are able to contribute to the research process as “experts by experience”, or if their experiential knowledge is “colonized” within the academic research team.

Webpage linking to different resources by the Scottish Community Development Centre.

A collection of examples of co-production and resources from a variety of sources.

A short e-book from a design agency in Canada on co-design sessions that consider participants’ language barriers.

The Co-Creating Welfare website offers a toolkit of training materials to help with the implementation of co-creation in the welfare sector.

In this document, the authors introduce co-production, explain how to use the toolkit, and preview all the tools and resources you will find within it. Whether you’re just starting out with co-production, or looking to refine your methods to meet a specific challenge, the authors hope you will find plenty of useful insights and inspiring stories in the toolkit.

This document collates a number of activities that the Q Community have found useful, and brings them together with some tips and ideas for people interested in applying these, or similar, methods themselves.

A toolkit for responsible research and innovation including resources to support co-production.

A report detailing ideas on how academics and the voluntary and community sector can work together to influence policy and practice.

This practice guide explores how to co-produce research, and highlights ways in which the concept of co-production has specific relevance and importance for academics, non-governmental organisations (NGOs) and communities within humanitarian settings.

Advice about co-production which considers the policy context within which approaches to co-production are being developed, explores what the term co-production means (the paper looks at definitions of co-production within health and social care and the principles underpinning co-production) and highlights different approaches to involving people.

Guidance on what co-production is and how to do it.

What is co-production? Who is doing it? Why do it? In the context of public service delivery in Wales

This guidance is for integrated care boards, NHS trusts, foundation trusts and NHS England. It supports effectively partnership working with people and communities to improve services and meet the public involvement legal duties. It includes a diagram of the different ways of working with people and communities (also known as 'the start with people flower diagram')

A co-produced resource exploring barriers to co-production and ways to address them, specifically in a mental health context. This guide provides you with some essential information, a bit of encouragement, and a lot of wisdom from people who’ve been successful in developing co-production.

This is the first of a series of Co-production Learning Reports produced as part of the Evaluation of Age Better in Sheffield. It focuses on understanding the Age Better in Sheffield approach to co-production and identifying wider lessons for co-productive approaches within and beyond Sheffield.

Have a read of the news section of our main website for a variety of resources, examples of co-production and much more

A video of a comedy sketch about people saying - 'I don't see race'

This episode of "Question it", the Black and Creative UK Podcast is titled "The Fear of Black" - Inspired by a social media post made by Ashely, that provoked some interesting discussions, he decided to put together a mixture of creative friends and have an open and honest discussion on why are we "so afraid of black people?"

Franchesca in an episode of Decoded explores white people whitesplaining whitesplaining

This video is a comedy sketch about people asking the question - 'Yeah but where are you really from?'

"There's a big difference between being not-racist and being anti-racist. I know it doesn't seem like it. I know that both of these things seem equally good, but they're not." In this video John Amaechi explores this statement and implores you to act - "you have tools at your disposal. Learn. Read. And make everybody clear where you stand."

This guidance about payment of public contributors has been compiled for researchers who need to cost public involvement activities at any stage of the research process, anyone in a professional role involved in costing public involvement advising researchers on budgeting for involvement or who has an interest in the topic, public contributors who want to know how their involvement in research is costed, research advisors/managers who provide guidance to the research community about involvement, commissioners of research who invite funding applications from the research community reviewers and panel members who appraise research projects with costed involvement activities

This guide is for patients, carers and members of the public thinking about getting actively involved in research and you are being offered expenses and/or payment for your involvement. It offers answers to some frequently asked questions and suggests where you might get advice about your particular circumstances

A briefing for local authorities, charities and organisations that support people who use services and their carers, looks at how people and carers who receive state benefits can get involved in paid co-production, involvement, participation in health and social care, highlighting what they need to be aware of to avoid any loss of benefits.

A selection of policy documents, publications and information on issues affecting Gypsies and Travellers

Based on the findings of a recent study of co-production as part of an EU research project, in this blog the author suggests efforts to facilitate co-production should focus on enabling the creation of academic identities that allow for authentic collaboration with research stakeholders

This toolkit is designed by Homeless Link (a national membership charity for organisations working directly with people who become homeless in England) to help services take steps towards introducing co-production.

This article explores co-production in relation to autistic people. The authors reflect on the co-production process with autistic adults from the Authentistic Research Collective at University College London (one of the Co-Production Collective pilot projects). The authors reflect upon six elements that are of potential importance for future coproduction projects with autistic adults

This Style Guide provides principles that can help ensure that written material considers the difficulties experienced by some dyslexic people and allows for the use of text to speech to facilitate ease of reading

The authors found that very few guides focus on the co-creation of research or target an audience from more than one sector. Many guides and tools concentrate on co-production between a sector and its users. This tool is designed to address the gap by focusing on co-creation by people engaged in what is commonly referred to as a ‘quadruple helix’.