Voluntary Sector Research Articles

‘We don’t make best use of art in public health’: lessons learned from co-producing a theatre performance to stimulate debate about Universal Credit

Background: Universal Credit radically changes the welfare system for working age adults in the UK. Although aiming to simplify the benefit system, its implementation has been widely criticised and the rollout beset with difficulties and delays, negatively affecting the lives of many claimants. Methods: Drawing on findings from a qualitative study of Universal Credit claimants and staff supporting them in North East England, we critically reflect on the process of co-producing a play for a public audience with Cap-a-Pie theatre company, artists, public partners, voluntary and community sector organisations and academics. Reflections and learning: We draw on reflections from stakeholders involved in the creative process and audience members’ responses to a filmed reading of extracts from the play. We explore the pitfalls, setbacks and successes of co-producing a theatre performance to communicate research findings and inform and enrich public discourse about Universal Credit. Discussion: The arts are a vital part of the public health landscape, but the potential utility of theatre remains underexplored as a tool to stimulate debate about the effects of welfare reform. We aim to contribute to debates about the challenges of co-production and social value of using arts-based methods in public health to address inequalities and promote social justice. Conclusion: We explore the extent to which collaborations between researchers, public, policy and practice partners, and theatre makers can raise awareness of the effects of Universal Credit, challenge negative attitudes about Universal Credit claimants, and stimulate debate about the adequacy of social security in the UK.

“I’ll meet you at our bench”: adaptation, innovation and resilience among VCSE organisations who supported marginalised and minoritised communities during the Covid-19 pandemic in Northern England – a qualitative focus group study

BackgroundThe Covid-19 pandemic has exacerbated pre-existing inequalities and increased adversity and challenges for vulnerable and marginalised communities worldwide. In the UK, the Voluntary Community and Social Enterprise (VCSE) sector play a vital role in supporting the health and wellbeing of people who are marginalised or experiencing multiple complex needs. However, only a small number of studies have focused on the impact that Covid-19 had on the VCSE sector.MethodsAs part of a Health Inequalities Impact Assessment (HIIA), we conducted qualitative focus groups with staff and volunteers from five organisations to examine short, medium and longer-term impacts of Covid-19 upon the VCSE sector in Northern England. Nine online focus groups were conducted between March and July 2021.FindingsFocus group transcripts were analysed using Framework Analysis and yielded three central themes: (1) exacerbation of pre-existing inequalities, adversity and challenges for vulnerable and marginalised populations; (2) the ‘price’ of being flexible, innovative and agile for VCSE staff and volunteers; and (3) the voluntary sector as a ‘lifeline’ - organisational pride and resilience.ConclusionsWhile the voluntary sector ‘adapted at pace’ to provide support during Covid-19 and in its continued aftermath, this resilience has potentially come at the cost of workforce and volunteer wellbeing, compounded by political obstacles and chronic shortage in funding and support. The VCSE sector has a vital role to play in the post-lockdown ‘levelling up’ agenda. The expertise, capacity and resilience of VCSE organisations, and their ability to respond to Covid-19, should be celebrated, recognised and supported adequately to maintain its resilience. To not do so threatens the sector’s sustainability and risks jeopardising attempts to involve the sector in addressing the social determinants of health.

PeRsOnaliSed care Planning for oldER people with frailty (PROSPER): protocol for a randomised controlled trial

BackgroundFrailty is common in older age and is characterised by loss of biological reserves across multiple organ systems. These changes associated with frailty mean older people can be vulnerable to sudden, dramatic changes in health because of relatively small problems. Older people with frailty are at increased risk of adverse outcomes including disability, hospitalisation, and care home admission, with associated reduction in quality of life and increased NHS and social care costs. Personalised Care Planning offers an anticipatory, preventative approach to supporting older adults to live independently for longer, but it has not been robustly evaluated in a population of older adults with frailty.MethodsFollowing an initial feasibility study, this multi-centre, individually randomised controlled trial aims to establish whether personalised care planning for older people improves health-related quality of life. It will recruit 1337 participants from general practices across Yorkshire and Humber and Mid-Mersey in the North of England. Eligible patients will be aged 65 and over with an electronic frailty index score of 0.21 or above, living in their own homes, without severe cognitive impairment and not in receipt of end-of-life care. Following confirmation of eligibility, informed consent and baseline data collection, participants will be individually randomised to the PeRsOnaliSed care Planning for oldER people with frailty (PROSPER) intervention or usual care in a 2.6:1 allocation ratio. Participants will not be blinded to allocation, but data collection and analysis will be blinded. The intervention will be delivered over 12 weeks by a Personal Independence Co-ordinator worker based within a voluntary sector organisation, Age UK. The primary outcomes are health-related quality of life, measured using both the physical and mental components of the Short-Form 12 Item Health Questionnaire at 12 months after randomisation. Secondary outcomes comprise activities of daily living, self-management capabilities and loneliness, admission to care homes, hospitalisations, and health and social care resource use at 12 months post randomisation. Parallel cost-effectiveness and process evaluations will be conducted alongside the trial.DiscussionThe PROSPER study will evaluate the effectiveness and cost-effectiveness of a personalised care planning approach for older people with frailty and inform the process of its implementation.Trial registrationmailto:ISRCTN16123291. Registered on 28 August 2020.

Antecedents and service contact in an observational study of 242 suicide deaths in middle-aged men in England, Scotland and Wales, 2017

IntroductionMiddle-aged men are the demographic group at highest risk of dying by suicide. We conducted a national study of deaths by suicide in men in mid-life to investigate the stresses...

Assessment of the Impact of Compulsory Insurance on Ensuring Economic Growth (the Case of the RA)

In the framework of this study, we have studied the works of many international authors related to the identification of the connections between the insurance market and economic growth, after which we have carried out our analysis using the Granger causality test model. The relationships between compulsory insurance and economic growth of the RA, using annual data throughout 2011-2022, have been examined in this paper. During the research descriptive statistical analysis and econometric models have been applied. The significance of the insurance-growth relationship has been better understood thanks to this study, which also includes other methods used in recent scientific publications. The following findings are the outcome of the research. • In Armenia we have a high correlation between voluntary and compulsory insurance sectors and economic growth indicators. • The Granger test has demonstrated a one-way causal relationship between GDP and voluntary insurance and bidirectional causality between compulsory insurance premiums and GDP variables. As a result of this research, the positive consequences of the introduction of a new type of compulsory insurance in the processes of ensuring economic growth have been substantiated.

Child protection and family support: Experiences in a seaside resort

Effective Early Help services are key to halting rising rates of children in care in the UK. Yet despite family support and child welfare interventions being unequally distributed across the country, the role of ‘place’ has received limited attention in the children’s social care arena. This paper examines the connections between coastal challenges, Early Help and child welfare interventions, drawing on embedded research undertaken within a Local Authority on England’s coast with elevated levels of children in care. We focus on families’ experiences raising children in a seaside resort area as well as professionals’ perspectives on the place-based challenges faced delivering effective and accessible Early Help support. The study generated data from ethnographic observations, semi-structured interviews, and focus groups with local parents/carers (n = 57), service managers and frontline professionals (n = 14), and the Voluntary, Community, and Social Enterprise (VCSE) sector (n = 22). The findings highlight how the socio-economic challenges associated with many seaside resort areas, including housing pressures, a seasonal and low-wage economy, and the transience of the population, present difficulties for parents/carers in raising and supporting their children. For professionals delivering Early Help, high levels of housing instability, elevated inward migration, resource constraints and challenges around recruitment and retention presented challenges to delivering services. This paper recommends increased emphasis in regulation and resourcing around family support that considers the spatial and geographic dynamics that influence the incidence, structuring, and experiences of child and family welfare.

How could businesses with anchor positioning contribute to community wellbeing? A study of supermarket community support actions in the UK

Challenging economic and social conditions undermine community wellbeing across the UK. Using desk research and case studies, we examined how one business sector, UK supermarkets, support local communities through community-orientated support actions (COSAs) as part of Corporate Social Responsibility commitments. A theory of change was developed drawing on community wellbeing theory and community asset-based practices, providing a framework for data collection and development of detailed hypotheses for particular COSAs and resources invested. Findings present the results of analysis according to context-mechanism-outcome configurations representing scenarios for the mobilisation of: community colleague's time; donations of money/goods; and store space. Contextual enablers and barriers are also identified, with a view to supporting practice within and across business sectors as well as possible collaborations with state and voluntary sectors to enhance the contribution of COSAs to local communities in the future. Five areas of more ‘transformative’ actions which would require more concerted and collaborative efforts were identified: collaboration in the wider system; mobilising physical store assets; actions on household food security; economic interventions and empowering the local community; alongside possible system levers for doing so.

Healthcare professional and commissioners' perspectives on the factors facilitating and hindering the implementation of digital tools for self-management of long-term conditions within UK healthcare pathways.

Physical activity is important in the self-management of long-term conditions (LTCs). However, implementing physical activity into clinical practice is challenging, due to complex barriers including access to programmes, time pressures, and transport costs, for people with comorbidities, managing multiple responsibilities. Various digital tools exist to overcome these barriers and support wide-scale implementation to help people stay physically active. We explored the experiences, needs and preferences of healthcare professionals and commissioners, regarding the use of digital tools to support people with LTCs to self-manage using physical activity. This included barriers and facilitators to implementing digital tools to support people with LTCs in NHS settings. Semi-structured interviews were conducted (April 2021 to January 2022) in Wessex, southern England, UK. Purposive sampling was used to recruit general practitioners and healthcare professionals, and convenience sampling to recruit commissioners (n = 15). Transcripts were coded to develop conceptual themes allowing comparisons between and among perspectives, with the Normalisation Process Theory (NPT)'s four constructs used to aid interpretation. Results showed that most digital tools supporting physical activity for LTCs, are not well implemented clinically. Current digital tools were seen to lack condition-specificity, usability/acceptability evidence-base, and voluntary sector involvement (i.e., NPT: coherence or 'making sense'). Healthcare professionals and commissioners were unlikely to engage with use of digital tools unless they were integrated into health service IT systems and professional networks (i.e., NPT: cognitive participation), or adaptable to the digital literacy levels of service users and staff (i.e., NPT: collective action-needs for implementation). In practice, this meant being technically, easy to use and culturally accessible (i.e., NPT: collective action-promoting healthcare work). COVID-19 changed professional attitudes towards digital tools, in that they saw them being viable, feasible and critical options in a way they had not done before the pandemic. Implementation was also influenced by endorsement and trustworthiness enhancing the perception of them as secure and evidence-based (i.e., NPT: reflective monitoring). Our findings highlight that consideration must be given to ensuring that digital tools are accessible to both healthcare professionals and patients, have usability/acceptability, and are adaptable to specific LTCs. To promote clinical engagement, digital tools must be evidence-based, endorsed by professional networks, and integrated into existing health systems. Digital literacy of patients and professionals is also crucial for cross-service implementation.

Perfect storm: emotionally based school avoidance in the post-COVID-19 pandemic context

School absences have risen following the COVID-19 pandemic and persistent absenteeism remains high in primary and secondary schools in England compared with pre-pandemic levels. This coincides with an upward trend...

“She’s Been a Rock”: The Function and Importance of “Holding” by Social Prescribing Link Workers in Primary Care in England—Findings from a Realist Evaluation

Social prescribing link workers are recently introduced roles in English primary care. One of their intended functions is to support patients with conditions influenced by the wider, social determinants of health. Their main purpose is to connect people to community resources to meet their nonmedical needs. However, our research reveals that link workers provide not only connections but also what we have described as “holding” for individuals with complex needs, who lack informal networks of support or who are waiting to access services. We explore the concept of holding, its meaning and significance in this context, and consider its consequences. As part of a realist evaluation, we observed seven link workers in GP practices in England during focussed ethnographies over a 3‐week period. We took field notes and interviewed 61 patients and 93 healthcare and voluntary sector professionals. Nine to twelve months later, we carried out follow‐up interviews with forty‐one patients, seven link workers, and a link worker manager. We identified four functions of holding: supporting patients waiting for services, sustaining patients as they prepare for change, reducing the emotional burden of primary healthcare professionals, and bearing witness to patients’ distress. Holding appears to be a vital but often overlooked aspect of social prescribing. Patients benefit from having a reliable and consistent person to support their emotional needs. However, similar to the impact of holding on other primary care professionals, there are unintended consequences: some link workers exceed their capacity, become overburdened, experience burnout, and leave their job. Recognizing the importance of holding and understanding its role in link workers’ primary care responsibilities are critical. If holding work is accepted as a role for link workers, providing training and support to them should be prioritised to ensure successful implementation and positive outcomes for patients, link workers, and primary healthcare staff.

What is the Role of the Third Sector in Integrated Care - Provider, Partner or Both?

To date, much of the integrated care literature and discourse regarding the Third Sector (e.g. community based nongovernmental, charitable, or voluntary agencies) have positioned the sector as service providers and/or system partners. We would argue that while these organizations are undoubtedly equipped to effectively respond to community’s needs, the sector and these agencies are often been characterized as lesser partners and viewed as 'nice to have' rather than core players within integrated health systems.
 Optimizing their engagement requires a more nuanced understanding of the nature, feasibility, and high value models of collaboration between public and third sectors in order to to design and deliver integrated care systems. The purpose of this interactive workshop is to discuss the current role of third sector organizations in integrated care and debate the merit and/or limitations of being seen as a system partner or a service provider; is there a value proposition for both positions? The session will be structured to enable both large and small group structured conversations through deliberative dialogue and table debates. Attendees can expect to be engaged in a provocative dialogue that aims to push our understanding of how we can achieve truly integrated health care with local voluntary and community organizations. Our exchange will likely produce diverse opinions that will be synthesized according to common themes across and within the group and serve as the basis of potential future SIG activities and academic research.
 This 90 minute session is designed for any academic, policy maker or practitioner interested in intersectoral partnerships and integration across health, social and voluntary sectors.
 Format:
 The time will be divided between an introductory overview, a teams of thought leaders will identify and raise key topic concepts followed by a series of table discussions, debates with time to share and synthesize.

Increased patient, public involvement in locality planning - the use of patient’s narratives to support service design and continuous improvement – An evaluation from the Northwest of England

People’s narratives on their experience of health and social care can be powerful drivers for change however, Ledema (2012) found that most patients and family members felt that the health service incident disclosure rarely met their needs and expectations (1). For people to feel confident in sharing the experiences they also need to be assured that the sharing of their stories will lead to change (2).
 Rochdale is a multi-ethnic (1 in 5 of the population coming from a black or minority background) locality within Greater Manchester. Around a quarter of local people have at least one or more long term conditions and a third of residents live within 10% of the most deprived neighbourhoods nationally (3). As part of the development of a system and place-based approach, Rochdale has developed system wide learning events. These events bring together partners from across NHS, local authorities, voluntary, community and faith sectors and communities. The uniqueness of these events is that they are led by a narrative of experience of services. A person, carer, or family who have had complex experience within services is invited and supported to share their story at a themed event. Then the patient’s story is contextualised within the wider system to provide an understanding of how services can support care, where gaps exist, where there are opportunities for integration, and where there are areas that require improvement. Linking the actualities of people's experience of service to the quality improvement programme is an important feature, as are the resulting action plans which are monitored and reported through the integrated boards. To ensure agreed on plans progress and as their impact on quality improvement is realised a co-production philosophy is adopted and the events are seen as a journey rather than one off event.
 Development of the evaluation approach has been used to grow and advance the events as this has enabled the impact of the events to be monitored and the events themselves to be modified and improved to ensure that they provide a unique and valuable resource in the boroughs journey to meaningful and impactful integration, which is based on peoples experience and centred on reducing the inequalities that people across the system.
 1)Piper, D., Iedema, R., Gray, J., Verma, R., Holmes, L., & Manning, N. (2012). Utilizing experience-based co-design to improve the experience of patients accessing emergency departments in New South Wales public hospitals: an evaluation study. Health services management research, 25(4), 162-172.
 2)Hanna, E., & Robert, G. (2021). Understanding amputation care in England and Scotland: a qualitative exploration of patient stories posted on an online patient feedback site. Disability and Rehabilitation, 1-9.
 3)Rochdale Borough Council (2020) Co-operating for better health and well-being Rochdale Borough -Locality Plan 2020-2024 retrieved https://www.rochdale.gov.uk/downloads/file/879/rochdale-borough-locality-plan

A mixed methods PAR study investigating social capital as a resource for Black and other racially minoritised communities in the UK: A study protocol.

Understanding how different Black and other racially minoritised communities thrive is an emerging priority area in mental health promotion. Literature demonstrates health benefits of social capital (social resources embedded within social networks). However, its effects are not always positive, particularly for certain subpopulations who are already disadvantaged.The CONtributions of social NEtworks to Community Thriving (CONNECT) study will use Participatory Action Research (PAR) to investigate social capital as a resource that benefits (or hinders) racially minoritised communities and their mental health. The CONNECT study was designed within a partnership with community organisations and responds to local policy in two South-East London Boroughs, thereby providing potential channels for the action component of PAR. Taking an anti-racism lens, we acknowledge the underpinning role of racism in creating health inequities. We apply an intersectional framework to be considerate of overlapping forms of oppression such as age, gender, socioeconomic status, and sexual orientation as an essential part of developing effective strategies to tackle health inequities. Key components of this mixed methods PAR study include (1) involving racialised minority community members as peer researchers in the team (2) collecting and analysing primary qualitative data via interviews, photovoice, and community mapping workshops, (3) developing relevant research questions guided by peer researchers and collaborating organisations and analysing secondary quantitative data accordingly, (4) integrating qualitative and quantitative phases, and (5) working closely with community and policy partners to act on our findings and use our research for social change.The PAR approach will allow us to engage community (voluntary sector and government) and academic partners in decision making and help address imbalances in power and resource allocation. Knowledge generated through this collaborative approach will contribute to existing community initiatives, policies, and council strategies. This will ensure the views and experiences of racially minoritised communities drive the changes we are collaboratively committed to achieving.

The role of mutual aid in meeting society’s needs: the example of community sports clubs’ responses to COVID-19 pandemic restrictions

This paper considers the role and limitations of mutual aid associations in meeting society’s needs. It does this by examining responses of community sports clubs (CSCs) in the UK to COVID-19 restrictions. We firstly make the case that CSCs typify mutual aid associations. Using two qualitative research studies we show how the clubs’ responses focused on meeting the needs of their own members, expressing bonding rather than bridging social capital. Clubs’ resilience was facilitated by the commitment of key volunteers, understood as serious leisure, and the complete overlap of governance and delivery in club management. These insights allow us to discuss the potential and limitations of this particular type of mutual aid association in meeting society’s needs, and qualify general assertions that the voluntary sector would respond to the COVID-19 crisis by developing social capital. It reinforces the need for a typology of the voluntary sector to inform understanding and research.

Clean Body, Clean Mind, Clean Job: The Role of Penal Voluntary Sector Organizations in Constructing "Good" Carceral Citizens

Clean Body, Clean Mind, Clean Job: The Role of Penal Voluntary Sector Organizations in Constructing "Good" Carceral Citizens

Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol

Background Homecare workers provide essential care at home for people at end-of-life but are often poorly trained and supported. Aim To explore the experiences and needs of homecare workers and the views of homecare clients and carers, and other community-based health and social care staff about the homecare worker role, including identification of good practice. Methods In this qualitative exploratory study, we will conduct 150 semi-structured interviews with homecare workers within three geographic English localities chosen for maximum socio-demographic variation. Eligible participants will be consenting adults providing care services (workers [n = 45], managers [n = 15] community practitioners [n = 30]), receiving care (clients thought to be in the last 6 months of life [n = 30], family carers [n = 15], or commissioners of homecare services supporting end-of-life care [n = 15]. Interviews may adopt a Pictor-guided or standard semi-structured approach according to their preference. Managers and commissioners can contribute to an online focus group if preferred. A range of recruitment strategies will be used, including through homecare agencies, local authorities, local NHS services, charities, voluntary sector groups and social media. Interviews and focus groups will be recorded, transcribed, anonymised, and analysed adopting a case-based approach for each geographic area within-case and then comparison across cases using reflexive thematic analysis. The design and analysis will be informed by Bronfenbrenner’s Adapted Ecological Systems theory. This study is registered on the Research Registry (No.8613). Contribution We will provide evidence on ways to improve the experiences and address the needs of homecare workers in relation to caring for people nearing end-of-life. It will offer insight into good practice around supporting homecare workers including responding to their training and development needs. Findings will inform subsequent stages of an evaluation-phase study of a training resource for homecare workers.

Embedded and exterior practices of cross-sector co-production: the impact of fields

Abstract Cross-sector co-production involving voluntary organisations in the production and delivery of social services has been adopted across many welfare states. Economic and demographic changes have led to increased involvement of volunteer initiatives in different welfare policy fields. How different field properties enable, constrain, and shape co-production practices remains, however, under researched. In this article, we address this shortcoming in a comparative case design exploring the practices of co-production within the two fields of elderly services and refugee services. We develop a conceptual framework and demonstrate that differential distribution of resources leads to diverging outcomes and perspectives for co-production. Based on a two-year in-depth study of one large Danish municipality, we find two forms of co-production practices, which reflect different field conditions. In the field of elderly services, co-production takes the form of ‘embedded’ practices, and in the field of refugee services co-production takes the form of ‘exterior’ practices. We demonstrate that each of these co-production forms entail ambiguous outcomes and antagonistic positions for voluntary and public sector actors, depending on the policy field.

Specificities of childhood tumours and the paediatric oncology service in the context of decentralisation

Tumors in children have peculiarities of natural development, diagnosis and clinical features, morphological structure, age, sex, pre-selection, etc. In the structure of oncopediting morbidity prevail hemoblasts 58-60%, brain tumors 17- 18%, kidney 7-7.5%, bone 5.0-5.5%, soft tissue sarcomas 4.0-4.5%, thyroid gland tumors 0.8-1.0%, reproductive organs1.0-1.2%, liver - 1.0%, others - 2.5-3.0% [15, 16, 23].Tumors in children occupy the second place in the structure of mortality of children up to 18 years of age. A special place goes to Eving’s sarcoma, Wilms’ tumor, embryonal rhabdomyosarcoma and others [21].The oncology service also has its own particular managerial features, such as having certain criteria and facilities, centres specialising in paediatric oncology, specialists, technical devices, diagnostic and treatment technologies, medical equipment and generic and effective drugs. The service must have onco-pediatric specialists in every region of the Republic of Moldova - north, centre, south and south-east. Interdisciplinary cooperation is needed with family medicine, local specialists and tertiary specialists, as well as with the families of these children, local administrative bodies and the voluntary sector. There is a need for an infrastructure for the paediatric oncology advisory service and interdependence with the Oncology Institute, rehabilitation centres, continuing education centres in hospital and palliative care, and social services.

The Better Start Bradford Perinatal Support Service Peer – Support Changing Lives

Better Start Bradford (BSB) is one of five ‘A Better Start’ programmes in England set up and funded by The National Lottery Community Fund. Sister sites are in Southend, Blackpool, Lambeth and Nottingham. Our aim is to improve the life chances of babies and very young children in the three most deprived wards in Bradford by changing the way services are commissioned and delivered, involving parents as equal partners. In partnership with parents, we are developing and testing ways to improve children’s diet and nutrition, social and emotional development, speech, language and communication. As well as this, we aim to bring about systems change – change, for the better, the way that local health, public services and the voluntary and community sector work together with parents to improve outcomes for children. We are finding out what works so we can share it to promote wider change. To do this we have commissioned and set up over 20 individual projects during the eight years which the programme has run and we are evaluating their impact with colleagues at Born In Bradford. The perinatal support service is one of these projects.

Co‐production in the PREVENT Next Generation Study: methodology and outcomes

AbstractBackgroundInvolving patients and the public as stakeholders (hereafter described as contributors) in the design and management of research studies is increasingly recognised as central to conducting ethical, meaningful and translatable research. Consulting and co‐producing are two methods for involving public contributors in the research cycle. This abstract describes the methodology used to establish a co‐production model for the PREVENT Next Generation (NextGen) research program, alongside initial impact the contributors have had on the program. The NextGen research programs aims to explore brain health in young adults (aged 18‐39), and all contributors represent this age group.MethodAdverts appealing for public contributors were sent to voluntary and community sector enterprises, universities, promoted on social media and spread via word of mouth. The first round of recruitment focused on contributors living in North America and Europe, with recruitment underway in Ghana. Contributors watched an introductory video, completed a form to indicate interest and were sent an invite to a virtual meeting. The aim of the initial work was to consider and feedback on the NextGen proposal, beginning the co‐production by identifying topics of interest for inclusion in planned work.ResultPublic contributors joined the initial meetings and were supportive of the need to understand more about brain health in young adults. Public contributors were interested in exploring topics such as the role of sex differences, social relationships and air pollution on brain health. Considering the focus groups (Phase 1 of NextGen), contributors advised having a choice of times that would support adults in work or education to join, as well as expressing a preference for virtual engagement for such studies.ConclusionEmploying a public involvement and co‐production model from the initial design stage of the NextGen study has proven invaluable to identifying topics of importance to include in future studies involving this age group. Future work will continue to develop the NextGen research program work with public contributors. Expansion of the public contributors to represent different global regions is underway, and will be critical to designing an inclusive study that is meaningful to the populations from which participants are enrolled.