Participatory research in and against time

The chapter records experiences of UKCR researchers whose projects incorporated co-production approaches to improve the usability, accessibility, relevance and credibility of outputs, and engage different groups of people in climate resilience.

This article looks at the processes of co-design and co-production in the context of health and social care to explore what what makes it possible for everyone to be involved and work together equally.

Over 2 years from 2022 – 2024 the Home? heritage project has collected and curated the lived experiences of displaced people who arrived in the North of England in the last 10 years seeking refuge and security.

This payment policy has been co-created by the Co-Production Collective community and is for anyone who co-produces with Co-Production Collective. It sets out who we can offer payment to, in what circumstances; rates and methods of payment; and information about expenses. It also signposts to further resources and support. Please feel free to use this policy in your own work or for ideas but please credit Co-Production Collective if doing so, thanks! First published in 2022, updated in Sept 2024.

In an effort to help leaders, organizers, and organizations stay focused on the structural and cultural roots of racial inequity, the Racial Equity Institute developed the “Groundwater” metaphor and accompanying analytical framework to explain the nature of racism as it currently exists in the United States.

Time to Talk Next Steps (TtTNS) has been a three-year (2021 – 2024) rights-based support programme for young people with additional needs aged 16 – 25 in England. As part of the final stages of the programme, NDTi are sharing the learning and reflections on co-producing the programme’s evaluation.

The Not Another Co-Production Cookbook includes recipes for successful co-production as well as tasty meals from the co-production community.

The Authentistic Research collective came together to tackle both of these issues as they wanted to investigate how psychological therapies can be adapted for autistic people, whilst at the same time exploring the process of co-production. The team compromised autistic and non-autistic members with diverse experiences in psychology, neuroscience, media and mental health, and were recruited via word of mouth and local groups. Their collaboration was co-produced from the beginning, giving the group the safety and freedom to be their ‘authentic’ selves.

The project began with questions around how to improve communication between people with hearing loss and health/social care professionals in North West London. The steering group, with people with hearing loss met regularly to co-design the workshop, so that it was accessible to people with hearing loss. This included having a hearing loop, a palantypist, sound system and rooms with good acoustics. This workshop brought together people with hearing loss, researchers, healthcare professionals and designers to develop novel research ideas

Maternity Voices Matter are trained maternity service users using a peer-led approach to community research to include the voices of families in co-producing and improving maternity services. Their aims are to listen to service users, give feedback to health professionals, and ensure that service users’ experiences are at the heart of service provision. They worked with NHS partners and a bilingual family support service at Manor Gardens Community Centre to co-produce a participatory research project into black and minoritised and ‘seldom-heard’ women’s experiences of maternity care.

Since we launched as Co-Production Collective in October 2020, our community has gone from strength to strength, supporting more and more organisations to co-produce. Members of our community are involved in this work on an ad-hoc basis as paid co-producers, but as demand has grown, so has the need to build this capacity in a more sustainable way. We decided to test out the approach of creating our own version of an ‘Associate model’, recruiting a group of people from our community to take a bigger and more ongoing role leading and supporting projects.

Autistic children and young people, and/or children and young people with a learning disability don’t always have access to hearing checks, or the checks are not appropriate to meet their needs. Since April 2021 we have been working with NHS England to provide co-production support for this project to gather views and generate ideas about how to develop more acceptable hearing checks for children and young people with a learning disability and/or who are autistic. We have also supported pilot projects in residential special schools to co-produce a new approach to hearing checks to test ‘what works.’

This project aimed to investigate how to make research evidence more useful for local decision-making by developing and testing four new methods to understand how evidence relating to child health from one setting might transfer to another setting. It was funded by the National Institute of Health & Care Research (NIHR) and led by the Evidence for Policy and Practice Information and Co-ordinating Centre, EPPI-Centre, at University College London (UCL) in partnership with Co-Production Collective.

This web resource is for anyone who is organising an event and wants to make it accessible. It is a practical handbook to make any event – whatever the size, whoever the participants – inclusive, so that everyone can take part in the way that best suits them.

In this article, the authors set out recommendations for co-producing research, emphasizing the importance of creating connections, or "build bridges," between researchers and various communities. The authors share important rules for effective teamwork and suggest the need for more money, support, and adaptability to make sure this collaborative method is ethical and makes a real impact.

People from minoritised ethnic groups can have difficulty getting health care. They may also be left out of health research. There is a need to include a more diverse group of people in health research. World Cafés are an accessible way to listen to people by getting them to talk to each other about different questions and topics.

This article discusses how knowledge is collaboratively produced in transdisciplinary research, highlighting the structured phases and significant aspects of this process. It also emphasizes the usefulness of the td-net toolbox, a collection of practical tools and methods designed to facilitate effective communication and collaboration among experts from various fields.

This article presents the co-production principles underpinning the co-creation of a multimedia theatre production on young people's mental health.

This document represents the outcome of over 50 conversations with internal and external experts, including public contributors, lay editors, public engagement/involvement managers, researchers at all stages of their career, as well as research ethics committees. This report is a snapshot of the experiences of people working in research and involvement.

There can be a lack of confidence among researchers about the ethical and safeguarding dimensions of this work – as well as a perceived tension between protecting people from harm and their rights to open participation. We wanted to create some guidance to improve knowledge and confidence about the ethical and safeguarding dimensions of collaborating with those “outside” the formal research system.

This paper builds on a previous article on an innovative approach to improve services by collaborating with service users and practitioners. It focuses on investigating the impact of this approach by including the perspectives of service users as collaborators and co-authors.

This article presents a scheme for understanding different kinds of co-production, and the different tradeoffs they entail. In so doing, they highlight 6 modes of co-production that emerge when particular design choices are made.

The terms co-creation, co-design, and co-production are often used interchangeably when describing initiatives involving multiple stakeholders. Although they share similarities, there are important differences, especially in the context of public health, regarding the roles and level of engagement of stakeholders and when they are involved. this article summarizes these similarities and differences by drawing from various fields such as public administration, governance, service management, design, marketing, and public health.

SPACES (Supporting Physical Activity through Co-production in people with Severe Mental Illness) is a study which aims to develop an intervention to increase physical activity created with and for people with severe mental ill health. The SPACES team employed a comprehensive process of Patient and Public Involvement and Engagement (PPIE) work embedded within a co-production strategy. The article describes the co-production model it uses, the benefits, challenges, achievements and areas for learning and improvement.

This study examines the collaboration between practitioners and service users in two programs over time, identifying the factors that contribute to or hinder the long-term sustainability of co-production. There is no single approach that guarantees sustainable co-production; it depends on the specific service and its operating environment. Sustainable co-production relies on four key elements: structure, skills, resources, and mutual commitment. The structure should effectively utilize available resources and skills to foster the ongoing commitment of both service users and professionals to continue collaborating.

The document explores the origins of co-production and co-design, their application in healthcare, and the challenges they bring. It also highlights the implications for healthcare practice and future research.

This handbook and practical guide is the result of eight years of collaboration between the New Economics Foundation (NEF) and local authorities. It sets out a model for designing, commissioning and delivering services s that they focus on commissioning for 'outcomes', promote co-production, and promote social value.

This article talks about the differences between how people experience time in their everyday lives and the ways that researchers and theorists think about involving people in research. It focuses on studying children who migrate alone and how their experiences with immigration and welfare systems often involve conflicting and sometimes unfair ways of dealing with time.

Written by autistic advocate Sarah O'Brien, this book gives a much-needed introduction into what autism is and removes the myths, stereotypes and stigma that surround it. Sarah provides insights into what to do after diagnosis and how to approach and navigate the process of informing those in your life, from your family and friends to your teachers or manager at work.

In the wake of the George Floyd killing and the Black Lives Matter protests, and at a time when many people are discussing white privilege, the BBC asked John Amaechi what it means to him. He explains: "there is nothing but benefit to understanding our own privileges, white and otherwise".

Despite increasing support within universities and amongst research funders for participatory research approaches, institutional processes and funding requirements continue to limit participatory engagements that meaningfully further social justice. Recognising this disconnect, UCL’s Institute for Global Prosperity, Co-Production Collective, and Institute of Education, supported by UCL’s Grand Challenge of Justice & Equality, set out to investigate the practical barriers university researchers and community partners face in conducting participatory social justice research.

Children and young people’s involvement is an increasing priority in UK healthcare and in heath research, alongside recognition that involving children and young people in research requires different considerations to involving adults. Underpinned by children’s rights and a co-production ethos this paper, co-authored with young evaluators, explores the learning from a co-produced evaluation of eyeYPAG, a young persons’ research advisory group (YPAG) for eye and vision research based at Moorfields Eye Hospital, London, UK.

This document is an introduction for applying co-production in social prescribing settings. It outlines what social prescribing and co-production are, and the philosophies and values of both, and how they complement each other. It looks at some key ingredients to create effective social prescribing through co-production, and suggests a ‘recipe’ which puts them into practice. This document was created through conversations with the National Academy for Social Prescribing Co-Production Group.

Report focusing on the practice of and learning about co-production, as well as the benefits for people, professionals and organisations. It shares ideas, examples, and inspiration from some of the 58 funded partnerships.

An animation, narrated by Brian Blessed which combines humour with honesty without the blame culture. Edgar Cahn’s book No More Throw-Away People relates the parable of the Blobs and Squares to explain the co-production imperative. This video co-produced by Time Banking UK retells the story.

Research Design Service South East (RDS SE), in partnership with the National Institute for Health and Care Research (NIHR) Centre for Engagement and Dissemination, have launched a podcast series: ‘That Co-production Podcast!’ The intention is to increase the accessibility of discussion, debate and issues related to co-production.

These innovative examples show the difference that can be made by fully involving patients, service users and local communities in the design and delivery of services, making the case for co-producing health and social services with the people they serve: No Decision About Me Without Me.

A handy how-to for any service users or survivors thinking about getting involved with their local NHS trust or research organisation, created by a critical theorist and activist collective. Recovery In The Bin is a a user-led group for Mental Health Survivors and Supporters who are fed up with the way co-opted ‘recovery’ is being used to discipline and control those who are trying to find a place in the world.

A quick guide on the meaning, differences and benefits of co-production, collaboration, and involvement. Tis strategy that has been co-produced by people with lived experiences of mental health, drug & alcohol challenges, and learning disabilities, carers, service staff, and those that fund services.

The presentation by Jacqui Lovell, Survivor Researcher Network Director, at the August Discussion and Support Group meeting, available in video form, together with the slides used. Themes include: definition of co-production, People, power and process in research, and an example of eurocentricity in mental wellbeing and mental ‘health’ research.

Over six months, Making Every Adult Matter worked alongside a group of people with experience of multiple disadvantage to define a shared approach to their work and to agree a theory of change that can help guide activities.

Reflecting on eighteen years of working and using health services with both patients and staff, this paper outlines how co-productive relationships are different from non co-productive relationships.

This paper is the story of how Dr Andrew Perry came to develop co-productive relationships in forensic environments over ten years. This time with a better psychological map, the benefit of hindsight and the illustrations of Jorge and Yousef.

This document interrogates co-productive relationships using the four principles of the British Psychological Society (BPS) (2018) code of ethics: respect, competence, responsibility and integrity. It concludes that co-productive relationships appear to have different ethical properties from other forms of helping relationships.

If you’re using co-production to involve people in the design of services that impact them and their communities, then this Toolkit is for you. There are 3 main elements to the Stronger Together Toolkit, all of which can be accessed here on this webpage.

Toolkit created by the Centre for Loneliness Studies, a research centre based at the University of Sheffield, exploring the co-production of services for older people who are lonely and/or isolated.

The Liverpool Co-PARS project was a four-year iterative process in which a physical activity referral scheme for inactive patients with health conditions was developed, refined, and evaluated. The aim of the present study was to explore multidisciplinary stakeholder perspectives of those involved in the co-production of Co-PARS and inform recommendations for future co-production research.

Article assessing whether research is relevant to society, arguing that to see more co-production, we need to revise the dominant metrics accordingly. In essence, metrics to assess co-production must themselves be co-produced.

Video recording of Co-production & the Future of Urban Epistemics, the third Sheffield Urbanism Lecture Series. The Sheffield Urbanism Lecture series is an initiative of the Urban Institute to stimulate dialogue, discussion and understanding of processes of urbanization and urban life.

Paper arguing that co-producing critique from within the university requires designing boundary spaces, intermediating between knowledge claims and balancing between articulated and attributed values for co-production. This gives rise to co-production as an epistemic praxis, not method, characterised by boundary work, epistemic choreography and triple shifting.

A rapid participatory appraisal was conducted with midwives and stakeholders from European Midwifery Units to explore the clarity and usability of the Midwifery Unit Self-Assessment (MUSA) Tool, to understand how it helps MUs identifying areas for further improvement, and to identify the degree of support maternity services need in this process.

This scoping review aims to map co-production approaches used in care homes for older adults in previous research to support the inclusion of residents and care staff as equal collaborators in future studies.

Involve is the UK’s leading public participation charity. On this webpage they provide an overview of co-production values and its definitions.

This visual guide offers you a map of the landscape of participatory research. Instead of a loop or a one-way road, we think about participatory research as a formation of Islands where co-researchers (co-travelers) might be exploring similar or different landscapes (issues and concerns) at the time when we are together on this journey.

This special issue editorial explores: How is creativity applied within co-production? How does such creativity influence the incorporation of evidence into policy or practice? What impact(s) or effect(s) does creativity have in these applications? What are the implications of this, and for whom?

This study aimed to understand how to reduce decline in physical function and physical activity in people with long-term conditions, using realist methods integrated with co-design to provide an explanatory account of what works (or does not), for whom and in what circumstances, to generate ideas about service innovation, and provide recommendations for primary care.

A review of evidence about commonly used approaches and tools used to help measure person-centred care. It summarises broad themes in the literature and is designed for those who want to gain a quick overview of important ideas and frequently used tools.

In this blog, a mixed-methods researcher who specialises in women’s mental health reflects on the process of doing this study and how the co-production approach resulted in a richer and more impactful study.

Presentation slides about how co-production supports the growth of shared space and blurs boundaries.

Nine vidoes from recordings from an event in Exeter – stories and examples of co-production.

Experience-based design using patient and staff experience to design better healthcare services. The first section is a guide which provides an overview of the EBD (experience based design) approach. The second part of the publication contains tools and advice which will help you to put the EBD approach into practice.

Website of a Community Land Trust set up by a community. A Community Land Trust (CLT) is a not for profit community-based organisation run by volunteers that delivers housing and other community facilities at permanently affordable levels for local people. There are a number of benefits to setting up and running a CLT. Usually, the stimulus is a desire to create affordable homes that are available to local people who cannot afford open market housing.

Website of a Community Development in Scotland led by community. Atmos is a project that is being led by the Totnes Community Development Society. TCDS is not for profit company based in Totnes, Devon, that seeks to support the community in obtaining land, managing and imaginatively developing it.

A list of book recommendation exploring co-production.

Article for those committed to promoting “people powered health” in our NHS and wider public services, about how might we think about power. Where previously old power models prevailed, in an age of radical connectivity the potential to utilise new power approaches in health and care is exploding.

By developing a circle of support around an individual – bringing people together around a person to share ideas about making a positive change in their lives. This change can be anything – from getting out and about more, to starting a new hobby or restarting an old one, or creating opportunities to spend more time with friends or family.

This summary outlines the key findings from seminars across the country, getting up close to how this change is happening on the ground.

A free 6-week, in-depth course on how clinical trials work. Very thorough, including how clinical research is regulated in the United Kingdom and internationally.

A range of resources, from tutorial videos to articles, handouts to website links, that are useful for people interested in story curation and supporting others to use their stories to influence decision makers.

Description of participatory budgeting with case studies. It is a form of citizen participation in which citizens are involved in the process of deciding how public money is spent. Local people are often given a role in the scrutiny and monitoring of the process following the allocation of budgets.

This guide is designed to give you the practical tools you need to develop an involvement programme and approach which places your service users at the heart of your organisation. It provides a structured and accessible introduction to involving people with lived experience of criminal justice in your work, including examples of good practice, checklists, top tips and signposting to further information and support.

This workbook can help you plan why, when and how to involve the people you work with in evaluation.

Resource on how to create a visual abstract for the sake of making information accessible.

Develop your language and communication skills for a career in healthcare and learn new healthcare vocabulary in English. May be of interest to people working with Refugee Communities - especially those that want to be involved and they need help with language.

A scoping review systematically mapping recent literature on co-production in applied health research in the United Kingdom to inform co-production practice and guide future methodological research. It argues for accepting the diversity in approaches to co-production, calls on researchers to be clearer in their reporting of these approaches, and makes suggestions for what researchers should record.

This paper explores the meaning of co-production for clinicians based on their experience of co-production in a Recovery College, using thematic analysis of eight semi-structured interviews with clinicians who have co-produced and co-delivered workshops with a Recovery College Peer Trainer.

This paper draws on conversations between a group of research associates who worked on a large-scale co-produced research project, Productive Margins: Regulating for Engagement. Through our conversations and subsequent analysis, three themes emerged regarding our experiences working on the project: (1) Working across difference; (2) Engaging with arts practice; and (3) Creating the conditions for co-production.

The evaluation was co-produced by University of Sheffield evaluators and Co:Create staff, using a range of methods to incorporate the views of stakeholders on the process of co-production.

Report on powerful and sometime surprising examples of where kindness and everyday relationships can effect change and support the wellbeing of individuals and communities. The report is not “stuffed full with policy recommendations, tool kits or calls for ‘compassionate impact assessments’.” But it does contain some powerful and challenging messages for policymakers.

This paper introduces Mental Health Experience Co-design (MH ECO), a peer designed and led adapted form of Experience-based Co-design (EBCD) developed in Australia. It identified eight possible mechanisms from an assessment of the activities and outcomes of MH ECO and a review of existing published evaluations.

Editorial about the different ways of knowing, prefacing articles exploring ways of sharing knowledge across language, cultural or disciplinary differences.

Through key informant interviews with parents, non-profit organizations and government officials, this article argues that accountability is not co-produced because citizen co-producers are overly burdened with a disproportionate share of risk and responsibility compared to government co-producers with minimal support.

Paper discusses co-production in quantitative research (with a specific focus on randomized controlled trials), how it can work in practice, and the barriers and enablers of co-production. It focuses on a randomized controlled trial of a peer support intervention in mental health which explicitly set out to coproduce knowledge and employed service user researchers.

Study of a set of experiments that offered subjects a financial incentive to assist municipalities in helping refugees integrate. The experiment was first conducted among university students within a laboratory setting. Then, the initial findings were replicated and extended among a general adult sample. Results suggest that small financial rewards have no effect.

This special issue arises from an international pursuit funded by the US National Science Foundation through SESYNC (the National Socio-Environmental Synthesis Center) to further explore the contribution of co-creation to support the use of evidence in policy and practice change.

This study describes the critical success factors behind SEARCH, focusing on how Study of Environment on Aboriginal Resilience and Child Health (SEARCH) was established, and continues to build trusting co-creative relationships. It also explores some continuing challenges and considers how the partnership might be strengthened.

The article focuses on the co-production of public services, offering theory-based and knowledge-based routes to evidencing co-production. It cites a range of ‘good enough’ methodologies which community organisations and small-scale service providers experimenting with co-production can use to assess the potential contribution, including appreciative inquiry, peer-to-peer learning and data sharing.

This programme is a large-scale collaborative ethnographic study which explores records and representations of community engagement, using the research to imagine how communities might be different and experiment with different forms of community-building.

Bringing together academics, artists, practitioners and ‘community activists’, this book explores the possibilities for, and tensions of, social justice work under the contemporary drive for community-orientated ‘impact’ in the academy.

This article is a response to ‘The dark side of coproduction: do the costs outweigh the benefits for health research?’ recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry.

This special issue of Nature looks at the promise and the pitfalls of research coproduction for the societies, stakeholders and scientists now working shoulder to shoulder.

The results of this research describe a sample of patient and family members currently engaged with health systems. We identified seven motivational factors underlying their engagement.

This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life.

There has also been a subtle shift in the discourse, with the language of co-design and co-production used more widely in debates about involvement. This shift has surfaced once again debates about what counts as meaningful involvement. In this paper we seek to contribute to this debate by exploring boundaries and overlaps between them.

Using first person reflective narrative, this paper explores how community participatory approaches enable barriers to co-production to be overcome in a primary mental health service.

In this paper the development of the Exchange Network is presented, an experimental learning space deliberately designed to foreground, and work on this relational dynamic in healthcare research and quality improvement.

This article draws upon an empirical study of ‘child-led research’ projects, undertaken in Bangladesh, Jordan and Lebanon, for a critical examination of the meanings and implications of ‘child-led research’. In particular, this paper explores what counts as knowledge in social science research within contexts of generational difference and power.

Two cases are presented — one from Brazil and one from Nigeria. The third section of the paper provides a brief overview of the theory of coproduction and its relevance for understanding the two cases. The last section addresses the implications of coproduction in polycentric systems for synergy and development.

This article looks at the purported advantages of co-production, and considers how these can best be accessed. A case study workshop involving social housing users and providers, conducted as part of the National Consumer Council-Unison Shared Solutions project, is used to illustrate the need for collective dialogue and deliberation between co-producers rather than purely transactional forms of co-production.

Editorial about whether co-production can work for mental health.