This paper outlines how service user co-investigators worked towards achieving informed consent to data linkage in a large-scale clinical trial in pregnancy with long-term developmental outcomes. The PANDA (Primary prevention of maternal ANaemia to avoid preterm Delivery and other Adverse outcomes) programme tests whether prevention of anaemia during pregnancy reduces adverse clinical complications such as preterm birth and low birth weight. One component is a randomised trial of 11,000 women taking oral iron from early in pregnancy versus placebo. Collection of infant and childhood data by linkage to relevant national datasets will enable efficient and robust assessment of key long-term developmental outcomes. Faced with the challenge of informing women’s consent, service user investigators have been proactive and adaptive in leading the development of women-facing materials. First, service user co-investigators consulted women to determine the breadth of issues important to them when considering consenting to PANDA. Then, they produced draft materials tailored to women’s information needs, prioritising information accessibility. Subsequently, they lobbied for, and led, additional focus groups with women from PANDA’s pilot trial to seek feedback on the bespoke materials and gauge the extent to which women understood the content and issues being expressed.
While citizen science (CS) has gained global reputation as a valuable participatory research methodology, over the last decade its demarcation is still somewhat controversial. Attempts to reach a precise definition of CS have resulted in several sets of criteria, principles and minimum requirements without universal normative power. In search of a transparent and just selection process, platforms offering access to CS projects started to define their own selection criteria. In 2017, the Austrian CS community co-created a set of 20 quality criteria to define minimum requirements for CS projects to be listed on the national platform Österreich forscht. After more than five years of applying the criteria, we reflect on the implications for CS projects in Austria. Our mixed method approach of qualitative and quantitative analysis across 103 projects shows no disadvantage for specific research domains or types of institution, but certain challenges for project coordinators to apply all criteria to their projects. The analysis suggests an overall improvement of projects, especially in regard to their ‘citizen scientificity’, meaning that the criteria helped them to better distinguish themselves from other scientific methods, improving their engagement, communication and open data management.
The Daphnia Detectives project was developed to communicate our research findings on the impacts of microplastics in freshwater environments using Daphnia (the water flea) as a model organism. A pillowcase, some pegs and pink particles form an integral element of the Daphnia Detectives activities, and are a good example of how everyday and specialist items can be blended to fit science communication needs. The project has developed a bank of open access online resources covering the topic of microplastics and Daphnia, from experimental design stages through to example results and data sets that can be used to explore data analysis themes, in addition to in-person sessions with schools to highlight this topic and provide hands-on experience with some of the techniques. Although the online content is designed to tie into the UK school curriculum as a way to bring real- world and current examples of ‘research in action’ into the classroom, it has the potential to be of interest to wider audiences, including as an interactive event at the 2022 British Science Festival. We also reflect on the refreshing insights that public engagement can have on researchers and the scientific process highlighted through this project.
This commentary explores the complexities and possibilities of survivor-informed, trauma-informed public involvement in health research, with particular attention paid to emotional labour, equity and community engagement. Drawing on my experience as both a survivor researcher and a public involvement manager, I reflect on the tensions involved in moving between professional and lived experience roles within research settings. I argue that meaningful involvement depends not only on inclusion, but on the conditions in which involvement takes place, including trust, role clarity, resourcing, support and shared power. Using examples from public involvement practice and relevant literature, I suggest that Applied Research Collaboration (ARC) Phase Two – an initiative funded by the National Institute of Health and Care Research (NIHR) that delivers research addressing the needs of local populations and health and care systems – offers an important opportunity to strengthen survivor-informed approaches within applied health research. This requires more than rhetorical commitment. It requires institutions to recognise the emotional and relational work of involvement, to engage communities in more equitable ways and to build cultures in which care, accountability and lived expertise are genuinely valued.
Recruiting participants for psychological research is a well-known and frequently reported challenge associated with the research process. This is especially challenging when recruiting younger populations, often leading researchers to rely on educational settings for recruitment and data collection. This commentary explores the challenges of conducting research in schools, the potential drawbacks of this reliance, and proposes an alternative approach to address these challenges. We propose an alternative recruitment method utilising public engagement sessions with established groups, such as Scouting and Girlguiding communities, to facilitate data collection. This recruitment model has the potential to transform recruitment dynamics, overcome many of the barriers associated with school-based testing and offer researchers an alternative pathway to optimise data collection in psychological research with young people.
To ensure that adult social care delivery is informed by evidence, it is crucial to establish links between the social care workforce, researchers and people with lived experience of accessing services, as well as their families/carers. The Kent Research Partnership is one such research capacity-building initiative in adult social care, supported by a public-led Expert by Experience (EbyE) working group. This paper discusses the nature of group activities and their model of involvement, as well as evidencing the group’s impact on the partnership overall. We present three evaluation approaches used to date: (1) an impact log; (2) biannual surveys; and (3) a National Institute for Health and Care Research-sponsored ‘Cube’ evaluation on the quality of public involvement and partnership working, and show that each have enabled us to capture different aspects of EbyE impact. Based on this, we argue that a single evaluation tool is unlikely to be sufficient, or adequately uncover both EbyE experiences and impact. EbyE impact is typically captured as part of research projects. Unusually, this paper showcases the impact of and reflections on EbyE involvement in a research capacity-building initiative, which has a broader and more emergent remit.
This article offers insights into delivering co-production in community settings, from the perspectives of engaged citizens and community partners. It adds to scholarship addressing epistemic justice issues that the experiences of engaged citizens are rarely explored. The engaged citizens are community collaborators in FoodSEqual (a UKRI-funded transdisciplinary project aiming to co-produce solutions to food system inequality in four UK locations). During FoodSEqual’s delivery, it became clear contextual factors and practical delivery varied. To support shared learning, an in-person reflective session was held using the ‘open space method’ (Involve, n.d.) (participants: Community Food Researchers (CFRs) (n = 14), community coordinators (n = 6)). Four key themes were defined during the session. A content analysis of observational notes was undertaken by a PhD student (BG) and CFR (MR). Resulting outputs were checked with most of the original participants. Areas identified by community collaborators as instrumental to successful co-production were: (a) engagement and building trust; (b) co-designing practical research activities; (c) balancing structure and flexibility; (d) community engagement outside activities. Contributions include suggestions to incorporate unstructured time within research activities that allow participants to raise other topics of interest, and training for non-community partners (perhaps secondments in community settings, where mutual learning could occur). We also highlight the need for increased understanding and acknowledgement of additional emotional and relational labour in community roles, and an institutional shift towards valuing process. Finally, we identify how the engagement model itself can contribute to food system transformation through building community capacity and connectivity.
Innovative approaches are urgently needed to address the growing concern of vaccine hesitancy. Used effectively, community theatre has the potential to promote health knowledge and attitude change as it encourages community dialogues and information sharing. We used research findings from a vaccine hesitancy study to develop a community play on maternal vaccines. The development of the script for the play was an iterative process between a local community theatre group and the research team. Outreaches in three community open spaces were held. Evaluation comprised notes and observations from outreaches and group discussions among community audiences. Discussions were recorded, transcribed and translated to English and analysed using thematic approach. We produced an entertaining and culturally relevant performance that conveyed key messages about maternal vaccines in a clear and accessible manner in the local language. Community feedback highlighted its effectiveness in dispelling rumours and correcting misinformation while enhancing knowledge and understanding of maternal vaccination. Community members appreciated that it was informative and educational, demonstrating how research-based theatre can serve as an innovative tool for public health communication. Researchers working in comparable contexts may adapt this approach to address vaccine hesitancy in their own settings.
Co-producing research with young people presents contradictions and challenges. Reflexive and relational spaces are essential to exploring and addressing these. Reflecting on the evolution of our co-production approach over the two phases of our study on growing up in coastal towns in the UK, we argue that reflexive, relational spaces are essential to recognise and respond to co-researchers’ diverse objectives, needs, knowledge and skills, and to address emerging contradictions and challenges, to build trust and mutual understanding, to learn from each other and to review and refine the research design as an ongoing, iterative process. This increases the possibilities of co-production for creating different kinds of impact, including on co-researchers’ skills and knowledge (at individual and team levels), and on relevant substantive knowledge, with potential for influencing policy.
Experimentalism in transformative policy and practice requires a different form of delivery that emphasises collaboration and learning. The Designing London’s Recovery Programme was a two-year programme that invited innovators to co-create transformative solutions to address local missions for change. It was delivered through a novel partnership between policy, practice and research. As ‘learning partners’ embedded in the programme, the research team led on a developmental and democratic evaluation approach which informed the process of developing, applying and refining a programme level theory of change as a form of embedded practice. Our multi-method approach was informed by participatory action research. A theory of change was developed at the outset of the programme that outlined activities, programme outcomes, transformative outcomes and overarching goals. Then it was applied during delivery, at a programme level, and used as a tool for learning and collective reflection. Insights from the reflection led to its refinement. The theory of change was used to convene people, build consensus and identify shared goals at the outset. By using a ‘transformative frame’ it provoked discussion about wider systems change. The theory of change took on a ‘navigational’ role throughout the programme, however it lacked democratic ownership and as a result wasn’t used to inform decision making about implementation, where other factors were prioritised.
Strictly Come Dancing (Strictly), airing from September to December in the UK each year, has some of the highest viewing figures of a British Broadcasting Corporation (BBC) show. The programme has been on television for 20 years; the last five years have seen the series broadcaster consider diversity and inclusion more in their casting. There have been same-sex couples, a D/deaf celebrity and disabled celebrities and dancers. This article draws on the Arts and Humanities Research Council/BBC Public Engagement project Strictly Inclusive, examining how D/deaf, disabled and LGBT+ communities in the Midlands, UK, engaged with inclusion and representation on Strictly. The project brought dance researchers, communities (D/deaf and LGBT+), and an industry partner (BBC) together to creatively explore inclusion in Strictly. The article introduces the context for the wider project and then focuses on graphic interchange formats (GIFs) creation as a method to respond to inclusion and representation on Strictly. GIFs are made up of a sequence of images taken in a stop-motion format that create a story when placed together. We describe the methods used in the project and consider the role of dance research with public engagement in terms of ideas of bodily awareness, intimacy, spatial awareness and the role of the dancing body. We conclude with the limitations of inclusion and challenges of the creative methods.
Despite having an increased risk of developing dementia, individuals from minority ethnic communities are largely overlooked by research and dementia services and are less likely to receive timely diagnosis and appropriate support. Culturally specific programmes and policies that promote awareness and engage with minority ethnic communities around brain health and dementia are urgently needed to prevent, diagnose and support people living with dementia. In response to these challenges, we developed and evaluated the Healthy Brain Healthy Life project, a targeted culturally tailored dementia-prevention public engagement project to create dialogue and engage with minority ethnic communities around brain health and dementia. The project involved a series of co-produced, culturally tailored interactive workshops with minority ethnic communities and community organisations in the UK. Outputs, which remain an available resource, included: (a) co-produced culturally tailored information booklet; (b) a recipe book, including six recipes and information on ingredients that support brain health; and (c) digital stories from each workshop, sharing the experiences of participants and highlighting key messages on brain health. This article is a practice case study that describes the co-production process, implementation and evaluation of the workshops. The project achieved national and international impact, creating dialogue around dementia in the workshops, the local community and on social media. Here, we share the learnings from our approach as an example of best-practice in engaging minority ethnic communities to develop knowledge and understanding of this stigmatised condition to inform future research. Our lessons demonstrate the value and impact of co-production and participatory methods embedded in cultural competency to create community discussion around public health agendas and messages.
Personalised Care Planning for Older People with Frailty (PROSPER) is a complex intervention comprising four work packages with multiple layers of public involvement. We explored the perceived value of public involvement within PROSPER and evaluated the current structure using the six core standards for public involvement developed by the UK National Institute for Health and Care Research (NIHR). Two lay members trained as peer researchers. They conducted semi-structured interviews with other lay members, the trial and programme managers and chief investigator. Interviews were not audio-recorded. Interview notes were written up and returned to participants for verification. Documentary analysis of minutes was also undertaken. Twelve interviews were conducted. Lay members felt involvement in the programme made them reflect on their own experience of older age and encouraged them to be more involved in future research. Lay member input resulted in tangible benefits, including securing funding. The use of the NIHR framework highlighted areas of strength and weakness in the public involvement structure and underpinned an action plan for improvements in the final work package. Public involvement in PROSPER had both perceived and tangible benefits for individuals, the programme, the NHS and wider society. The NIHR standards framework is a useful tool for evaluating public involvement structures in programmes of complex interventions.
In this practice case study, we explore the personal impact of a participatory research project in the UK on community and university researchers. We discuss the key themes that emerged from a reflective discussion with community researchers and the partner organisation at the end of the project: the importance of building and strengthening relationships throughout the project; the opportunity that the project provided all stakeholders to develop new skills and self-confidence; and the balance between giving back to the community through research while also navigating research as insiders. Our experience underscores the importance of self-reflection throughout participatory research projects. This needs to come with the flexibility to adapt research designs, to ensure that all stakeholders are comfortable with their role in the project. Our discussion also highlights the potential for positive personal impacts as a result of participatory research, particularly the opportunity for researchers to acquire new skills and build confidence. These positive effects may be maximised by embedding opportunities for skill consolidation into the research project from the start.
This article tells a critically reflexive story in two parts. Part 1 focuses on an initiative during the Covid-19 pandemic to grow service user-led involvement in social work education. Part 2 focuses on the production of this article. Using collaborative autoethnography, we share our experiences of the development of an educational resource: ‘The Mental Self in Social Work Education and Practice’, designed to encourage critical self-reflection in thinking about mental health and distress, recognition of distress in the self and others, and to enhance capacity for self-care and support for colleagues and service users. Envisioning collaborative autoethnography as a form of co-production, we explore themes emerging from our reflections on the development of ‘The Mental Self’. Building on current critiques of co-production, a process implying equality, diversity, accessibility and reciprocity, we share our learning about the value of collaborative autoethnography in creating more egalitarian writing partnerships between people with lived experience of accessing services and academics without such experiences. Avoiding any romanticisation of co-production, we identify disruptive influences and those that support more equitable forms of knowledge production that can be used to disturb the superiority of the academy over the knowledges and skills of people accessing social work services.
Engaging neurodivergent individuals in research events is crucial, as they offer unique perspectives that can shape the future of research, yet they are often unintentionally excluded. The Children and Young People’s Mental Health Research Collaboration at the University of Exeter, UK, conducts research on neurodivergence and neurodevelopmental differences, as well as engagement events. Here, we aim to understand effective engagement event formats tailored to neurodivergent families. This reflective article compares and contrasts insights from two events that sought to prioritise the needs of neurodivergent families. The first was held at the University of Exeter and was attended by over one hundred family members with children with attention deficit hyperactivity disorder; the second had nearly one thousand attendees in Falmouth, Cornwall and was for the wider public, but it incorporated accessibility adaptations. Evaluation feedback was gathered from participants and volunteers at both events by post-event surveys. The attention deficit hyperactivity disorder event fostered an environment where families felt comfortable and could freely express themselves. Conversely, the wider public event reached a larger audience, yet it faced challenges in identifying and supporting neurodivergent attendees in a busy setting. Variations in event space layout also influenced the visitor experience. Both events effectively engaged neurodivergent audiences. We have created a checklist of considerations for future events. Refining these approaches, prioritising them in current and future event planning, and learning from event feedback, will contribute to securing inclusivity. Making research events accessible to neurodivergent audiences is essential for integrating diverse perspectives into research. By employing meaningful engagement, we can enhance inclusivity and incorporate insights from under-represented voices.
Despite extensive adoption and substantial investment in educational technology (edtech) tools, their full potential to enhance learning remains largely untapped. Addressing this gap requires improving research infrastructure, fostering collaborative environments, and promoting domain-specific educational research through innovative methods. This article reflects on lessons learned from academia–industry partnerships in edtech, focusing on engagements aimed at driving impactful outcomes and strengthening evidential support for children’s edtech. In the absence of government-funded infrastructure for sustaining these partnerships, we established an international, virtual Centre for edtech Impact to connect researchers, industry and practitioners. Drawing on examples from the Centre’s work, I highlight the challenges and opportunities in edtech academia–industry collaborations and outline pathways for future partnerships to develop more effective technologies for children’s learning.
Puppetry has been utilised as an effective mechanism to facilitate conversation and communicate complex topics across a variety of disciplines. To provoke discussions, our project aimed to utilise puppets as an effective and entertaining ‘bridge’ to increase the confidence of young people, enabling them to question and explore scientific endeavours, and to increase the confidence of engineers to communicate their work with young people. This proof-of-concept was anchored in the research of the Centre for Enzyme Innovation at the University of Portsmouth, UK, which focuses on developing low-carbon biotechnological solutions for recycling problem plastic waste in a circular economy. The science was effectively interpreted and discussed through co-designed puppetry workshops between engineers from the University of Portsmouth and young people from the community through engagement with community partners Artswork, The Makers Guild, the company Making Theatre Gaining Skills in Bognor Regis and secondary school students at the Admiral Lord Nelson School in Portsmouth. Through this approach, we demonstrated that 86 per cent of the young people gained a deeper understanding about what engineers do, and 79 per cent about how engineering improves our lives. The majority of engineers felt more confident and motivated in utilising arts-based techniques in their engagement practice following the project. Through this work, we demonstrated that puppetry can be used to bridge the gap between scientists/engineers and underserved communities, although this can be limited by the power dynamics that currently exist in society.
This article takes a transdisciplinary approach to a relatively simple-sounding task – tree measuring. It asks the question, ‘How many ways are there to measure a tree?’, in order to provoke a discussion of our different ways of knowing. It attempts to engage a reader in thinking about disciplines and what they do. It does so by sharing insights from a project in which diverse scholars, practitioners and children came together for the common purpose of producing engaged knowledge. The experience of reading the article should prompt questions about whose knowledge counts and why, and the value of university research that is engaged and grounded. We conclude with a question of what kinds of measurements matter and why. The article takes the reader through different disciplinary perspectives, from science to social science to poetry, and, in that process, engages with the ‘how’ of disciplines in terms of real-world problems.
Science shows are often posited as a route to encourage young people to engage with science. Using a mixed methods approach, our research investigated the impact of attending a science show on high school students’ intentions to study science or pursue a career in science. We found that while a single visit to a science show has little impact on students’ aspirations, it can reinforce students’ confidence in their ability to succeed in science. In terms of design and performance, the best-received shows included ‘real-world’ content that students could identify as relevant to their lives.
