Use of population and administrative data has intensified ethical scrutiny around data security, representativeness, and research validity. Public trust has been weakened by data misuse, limited transparency, and poor alignment with community priorities. Existing engagement approaches are often inadequate for data-intensive environments where public roles and effective engagement remain poorly understood. In response, UK partners across disciplines and sectors established the Public Engagement in Data Research Initiative (PEDRI) and co-developed Good Practice Standards for Public Engagement in Data for Research and Statistics, alongside a public pledge. A PEDRI Frontiers meeting in June 2025 convened 60 stakeholders from government, regulation, industry, academia, community organisations, and the public. Participants compared the Standards with frameworks in their fields, examining their relevance to different publics and communities and highlighting strong alignment. Discussions focused on public engagement in statistics, administrative data, equity, diversity and inclusion, industry research, and artificial intelligence. This presentation will explore key insights, including evidence that involving the public as active partners in data use increases the relevance and impact of research while enabling communities to influence agendas and secure meaningful benefits. Definitions of “the public” vary across sectors and often require a broader, needs-based focus on what end users value. Participants mapped the Standards to existing frameworks in ethics, psychology, anthropology, political theory, and communication science. Cross-disciplinary mapping revealed trust as foundational, spanning transparency, accountability, and reciprocal benefit. The PEDRI Standards are enabling more democratic, effective, and socially accountable approaches to public engagement in data research.

Violence in the community can impact access to health care. This scoping review examines the impact of urban violence upon youth (aged 15-24) access to sexual and reproductive health and trauma care in Low and Middle Income Countries (LMICs). We searched key electronic health and other databases for primary peer-reviewed studies from 2010 through June 2020. Thirty five of 6712 studies extracted met criteria for inclusion. They were diverse in terms of study objective and design but clear themes emerged. First, youth experience the environment and interpersonal relationships to be violent which impacts their access to health care. Second, sexual assault care is often inadequate, and stigma and abuse are sometimes reported in treatment settings. Third is the low rate of health seeking among youth living in a violent environment. Fourth is the paucity of literature focusing on interventions to address these issues. The scoping review suggests urban violence is a structural and systemic issue that, particularly in low-income areas in LMICs, contributes to framing the conditions for accessing health care. There is a gap in evidence about interventions that will support youth to access good quality health care in complex scenarios where violence is endemic.

Community and public engagement (CPE) is increasingly becoming a key component in global health research. The National Institute for Health Research (NIHR) is one of the leading funders in the UK of global health research and requires a robust CPE element in the research it funds, along with CPE monitoring and evaluation. But what does "good" CPE look like? And what factors facilitate or inhibit good CPE? Addressing these questions would help ensure clarity of expectations of award holders, and inform effective monitoring frameworks and the development of guidance. The work reported upon here builds on existing guidance and is a first step in trying to identify the key components of what "good" CPE looks like, which can be used for all approaches to global health research and in a range of different settings and contexts. This article draws on data collected as part of an evaluation of CPE by 53 NIHR-funded award holders to provide insights on CPE practice in global health research. This data was then debated, developed and refined by a group of researchers, CPE specialists and public contributors to explore what "good" CPE looks like, and the barriers and facilitators to good CPE. A key finding was the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community.

The public and patients can be powerful sensors for shaping and powering healthcare research. They are joining research teams as investigators and collaborators to co-produce evidence for the practical use of interventions in clinical practice. While clinicians and researchers are encouraged by funders and policymakers to involve the public and patients as partners in research, knowledge on what involvement consists of is limited, and the continuum between consultation, collaboration and co-production are not clearly defined. In this article, we explore Patient and Public Involvement (PPI) and introduce greater involvement through research co-production. Co-production describes ways that research partnership can work through public and patient involvement and we outline the similarities of co-production to "The Commons", a strategy utilized by economists to increase effective use of resources. We share examples of how public and patient involvement have used co-production, to demonstrate financial and health benefits. We then outline practical challenges at system, social and cultural levels and consider how others have worked to resolve them.

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.

Doreen Tembo and colleagues argue that small changes as well as larger system-wide changes can strengthen citizens’ contribution to knowledge in health research

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. © their respective authors, 2021. All rights reserved.

OBJECTIVES:Measures to limit the spread of infection during the COVID-19 global pandemic have made engaging and involving members of the community in global health research more challenging. This research aimed to explore how global health researchers adapted to the imposed pandemic measures in low and middle income countries (LMICs) and how they overcame challenges to effective community engagement and involvement (CEI).DESIGN:A qualitative two-stage mixed-methods study involving an online survey and a virtual round table.SETTING:The survey and round table were completed online.PARTICIPANTS:Of 53 participants, 43 were LMIC-based or UK-based global health researchers and/or CEI professionals, and 10 worked for the National Institute for Health Research or UK Government's Department of Health and Social Care.OUTCOME MEASURES:This study aimed to capture data on: the number of CEI activities halted and adapted because of the COVID-19 pandemic; where CEI is possible; how it has been adapted; what the challenges and successes were; and the potential impact of adapted or halted CEI on global health research.RESULTS:Pandemic control measures forced the majority of researchers to stop or amend their planned CEI activities. Most face-to-face CEI activities were replaced with remote methods, such as online communication. Virtual engagement enabled researchers to maintain already established relationships with community members, but was less effective when developing new relationships or addressing challenges around the inclusion of marginalised community groups.CONCLUSIONS:COVID-19 has highlighted the need for contingency planning and flexibility in CEI. The redesigning and adopting of remote methods has come with both advantages and disadvantages, and required new skills, access to technology, funding, reliable services and enthusiasm from stakeholders. The methods suggested have the potential to augment or substitute previously preferred CEI activities. The effectiveness and impact of these remote CEI activities need to be assessed.

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?

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 being largely 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 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 contribution to Policy Press's Rapid Responses series on the pandemic (https://bristoluniversitypress.co.uk/rapid-responses) is a practical book about the value and means of co-production. In this edited collection, we address how and why more collaborative, diverse, and inclusive responses could lessen the toll of this pandemic and future health emergencies, as well as challenge and improve 'business as usual' beyond the pandemic. It illustrates how and why this way of working can help to address the social wrongs we need to right: inequalities, discrimination, and marginalisation. The grave consequences of following the precedents set during this pandemic – in terms of morbidity, mortality, marginalisation, and wasteful ineffective policy – emphasise the urgency with which we must act to do things differently, to demonstrate why co-produced responses are required, and how policymakers, practitioners, service users, activists, communities, and citizens can make this happen both now and in the future. To achieve these aims this book has been divided into three parts over two volumes: (1) The impact of existing structures; (2) Infection and (increasing) marginalisation; (3) Working together at a distance: guidance and examples. Parts I and II have been addressed in Volume 1, which you can read here: https://policy.bristoluniversitypress.co.uk/covid-19-and-coproduction-in-health-and-social-care. Volume 2 is dedicated to addressing Part III. It does this by providing a series of international examples of how groups have co-produced during the COVID-19 pandemic in order to address issues relating to health and social care. Throughout this volume, contributors reflect on their pandemic co-production endeavours in relation to both pre- and post-pandemic times.

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.

In this edited collection, our aim was to illustrate the value and means of co-production or, more specifically, why it is valuable and how it can be done. It is worth noting that our starting point for achieving this aim was reflecting on who has been disproportionately disadvantaged by the pandemic and how discrimination, marginalisation, and exclusion increased their vulnerability to both the COVID-19 virus (in terms of mortality and morbidity) and the implications of responses to its spread (in terms of relative access to resources, support, and involvement in key decision-making processes in research, policy, and practice). Our attention then turned to how we could ensure this book became a platform for these people, groups, and communities to share their experiences, insights, and expertise. As was outlined in the introduction to this volume, co-production has over time been defined and conceptualised in different ways. What our ambition for this book reveals is that central to our conceptualisation and practice of co-production in health and social care research, policy, and practice is an egalitarian imperative. That is, our primary interest in and advocation for co-production is as a means to ensuring that collaborative endeavours that explicitly address inequities in power can support marginalised communities, citizens, patients, and services users to create, shape, and improve health and social care research, policy, and practice.

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.

Internationally, the idea of "co-production' has become more popular in health research because of the promise of partnership between researchers and patients to create research that focuses on patients' needs. Patient and public involvement (PPI) at an early stage in deciding what research should be funded, can improve the quality and impact of research. However, professional power over the process places limits on the public practising their participatory rights for involvement in commissioning research that affects them and can leave members of the public feeling unheard or excluded, particularly within the context of early phase applied health research. This article explores whether and how the public can be involved in the co-production of research commissioning early on in the process, with a focus on the power relations that pervade basic and early phase translational applied health research. An exploratory literature review of international peer-reviewed and gray health research literature using structured searches of electronic databases and key search terms. There is very little literature that critically evaluates how PPI is embedded into the early phases of the commissioning process. The field of basic or early translational applied research appear to be particularly challenging. Four themes which emerged from the review are: reasons for PPI in research commissioning; benefits of PPI at strategic levels of research commissioning; contributions of patients and members of the public; improving PPI in research commissioning. Although the public are being consulted at some stages of the research commissioning process, it is evident that the process of determining research priorities and agendas is far from being widely co-produced. Moving PPI from a consultative paternalistic model to a collaborative partnership model should be a priority for commissioners. Significant changes to communication, practices, systems, structures, or cultures that exclude patients and the public from contributing in meaningful ways, are needed to fulfill the potential of co-produced models of research commissioning.