Citizen experts in participatory governance: Democratic and epistemic assets of service user involvement, local knowledge and citizen science

Initiatives that attribute expert status to ‘ordinary citizens’ proliferate in a range of societal realms and are generally celebrated for ‘democratising expertise’. By tapping new sources of knowledge and participation simultaneously, such ‘citizen expertise’ practices seem to provide responses to the contemporary decline of trust in political elites and traditional experts that seriously challenges the legitimacy of democratic policy-making. This study distinguishes between three quintessential types of citizen expertise (‘local knowledge’, ‘service user involvement’ and ‘citizen science’) and, from an integrated perspective, critically discusses the value of citizen expertise for public knowledge production and democratic governance. Drawing on empirical insights and on theories of democracy and of expertise and knowledge, the concepts of expertise and participation are refined and quality conditions of citizen expertise are developed. The study argues that citizen expertise is epistemically particularly valuable when it is based on distinct, non-ubiquitous experiences and on collective, not just individual, insights. It contends that representativeness is key to the democratic legitimacy of citizen experts in the policy context and points to the key role of organised civil society in establishing the required accountability relationships.

The United Kingdom and the Netherlands maternity care responses to COVID-19: a comparative study

Background: The national health care response to coronavirus (COVID-19) has varied between countries. The United Kingdom (UK) and the Netherlands (NL) have comparable maternity and neonatal care systems, and experienced similar numbers of COVID-19 infections, but had different organisational responses to the pandemic. Understanding why and how similarities and differences occurred in these two contexts could inform optimal care in normal circumstances, and during future crises. Aim: To compare the UK and Dutch COVID-19 maternity and neonatal care responses in three key domains: choice of birthplace, companionship, and families in vulnerable situations. Method: A multi-method study, including documentary analysis of national organisation policy and guidance on COVID-19, and interviews with national and regional stakeholders. Findings: Both countries had an infection control focus, with less emphasis on the impact of restrictions. Differences included care providers’ fear of contracting COVID-19; the extent to which personalised care was embedded in the care system before the pandemic; and how far multidisciplinary collaboration and service-user involvement were prioritised. Conclusion: We recommend that countries should 1) make a systematic plan for crisis decision-making before a serious event occurs, and that this must include authentic service-user involvement, multidisciplinary collaboration, and protection of staff wellbeing 2) integrate women’s and families’ values into the maternity and neonatal care system, ensuring equitable inclusion of the most vulnerable and 3) strengthen community provision to ensure system wide resilience to future shocks from pandemics, or other unexpected large-scale events.

Investigating Mental Health Service User Opinions on Clinical Data Sharing: Qualitative Focus Group Study

Background Sharing patient data can help drive scientific advances and improve patient care, but service users are concerned about how their data are used. When the National Health Service proposes to scrape general practitioner records, it is very important that we understand these concerns in some depth. Objective This study aims to investigate views of mental health service users on acceptable data sharing to provide clear recommendations for future data sharing systems. Methods A total of 4 focus groups with 4 member-checking groups were conducted via the internet between October 2020 and March 2021, with a total of 22 service users in the United Kingdom. Thematic analysis was used to identify the themes. Results Six main themes, with several subthemes were identified, such as the purpose of data sharing—for profit, public good, and continuation of care; discrimination through the misattribution of physical symptoms to mental health conditions (ie, diagnostic overshadowing) alongside the discrimination of individuals or groups within society (ie, institutional discrimination); safeguarding data by preserving anonymity and confidentiality, strengthening security measures, and holding organizations accountable; data accuracy and informed consent—increasing transparency about data use and choice; and incorporating service user involvement in system governance to provide insight and increase security. Conclusions This study extends the limited research on the views and concerns of mental health service users regarding acceptable data sharing. If adopted, the recommendations should improve the confidence of service users in sharing their data. The five recommendations include screening to ensure that data sharing benefits the public, providing service users with information about how their data are shared and what for, highlighting the existing safeguarding procedures, incorporating service user involvement, and developing tailored training for health care professionals to address issues of diagnostic overshadowing and inaccurate health records. Adopting such systems would aid in data sharing for legitimate interests that will benefit patients and the National Health Service.

Missing Hero: Co‐Producing Change in Social Housing Programmes

The aim of this article is to develop theory and generate knowledge about the challenges and possibilities of co‐producing change in a social housing programme. The purpose of the project was to implement the Housing First philosophy in the social housing programme in the city of Helsingborg, Sweden. The aim was also to create opportunities for service user involvement. Several innovative measures were implemented in order for these changes to occur from autumn 2016 to summer 2017. The social services commissioned a university course on which social workers and their clients studied together on equal terms to create project plans for the further development of their own workplace. A “Future” workshop was held by the researchers with representatives from all the different housing options (the shelter, transitional housing, category housing, Housing First apartments), both clients and social workers. Repeated dialogue meetings were conducted at the different housing options to discuss how service user involvement could be developed and to discover new ways of participation. This article is based on a strengths‐based perspective using the theoretical discussions on social traps, as well as the concepts of enabling and entrapping niches. We show the importance of social workers identifying and supporting missing heroes—service users who want to participate and be involved in co‐producing change. We also show that if an organisation is not prepared for the initiated changes, there is a risk of disappointment due to awakened expectations that are not fulfilled. Building trust is also an important component to emerge from the material, but we also found that change processes can be initiated that continue and have impact beyond the initial project’s goals.

Professionals’ views on children’s service user involvement

Purpose Children are gradually attaining recognition as service users and their involvement in service development has been advanced in recent years. This study draws on empirical research in social and health-care services designed for children and families. The purpose of this paper is to analyse how professionals understand children’s involvement as experts by experience. The focus is on professionals’ views and intergenerational relations. Design/methodology/approach The research data comprise 25 individual and 10 group interviews with managers and professionals working in social and health-care services in one Finnish province. The data were analysed using qualitative thematic analysis. Findings The professionals recognised the value of children’s service user involvement. However, they concentrated more on the challenges than the possibilities it presents. Health-care professionals emphasised parental needs and children’s vulnerability. In turn, the professionals from social services and child welfare non-governmental organisations perceived children as partners, although with reservations, as they discussed ethical issues widely and foregrounded the responsibilities of adults in protecting children. In general, the professionals in both domains saw themselves as having ethical responsibility to support children’s service user involvement while at the same time setting limits to it. Originality/value This study confirmed the importance of taking intergenerational relations into account when developing children’s service user involvement. The results indicate that professionals also need to reflect on the ethical challenges with children themselves as, largely owing to the generational position of children as minors, they rarely perceive them as partners in ethical reflection.

Investigating Mental Health Service User Opinions on Clinical Data Sharing: Qualitative Focus Group Study (Preprint)

BACKGROUND Sharing patient data can help drive scientific advances and improve patient care, but service users are concerned about how their data are used. When the National Health Service proposes to <i>scrape</i> general practitioner records, it is very important that we understand these concerns in some depth. OBJECTIVE This study aims to investigate views of mental health service users on acceptable data sharing to provide clear recommendations for future data sharing systems. METHODS A total of 4 focus groups with 4 member-checking groups were conducted via the internet between October 2020 and March 2021, with a total of 22 service users in the United Kingdom. Thematic analysis was used to identify the themes. RESULTS Six main themes, with several subthemes were identified, such as the <i>purpose</i> of data sharing—for profit, public good, and continuation of care; <i>discrimination</i> through the misattribution of physical symptoms to mental health conditions (ie, diagnostic overshadowing) alongside the discrimination of individuals or groups within society (ie, institutional discrimination); <i>safeguarding</i> data by preserving anonymity and confidentiality, strengthening security measures, and holding organizations accountable; data <i>accuracy</i> and <i>informed consent</i>—increasing transparency about data use and choice; and incorporating <i>service user involvement</i> in system governance to provide insight and increase security. CONCLUSIONS This study extends the limited research on the views and concerns of mental health service users regarding acceptable data sharing. If adopted, the recommendations should improve the confidence of service users in sharing their data. The five recommendations include screening to ensure that data sharing benefits the public, providing service users with information about how their data are shared and what for, highlighting the existing safeguarding procedures, incorporating service user involvement, and developing tailored training for health care professionals to address issues of diagnostic overshadowing and inaccurate health records. Adopting such systems would aid in data sharing for legitimate interests that will benefit patients and the National Health Service. CLINICALTRIAL

Reflections on running online expert advisory groups with young people with lived experience of depression

Service user involvement is fundamental to healthcare research, including knowledge transfer, advising on study protocols and the development of interventions. However, to date, service user involvement within child and adolescent mental health research is still uncommon and there is limited focus on best practice within the literature. Furthermore, consultations and advisory groups have traditionally been held face-to-face; however, the COVID-19 pandemic has accelerated a shift towards online research involvement as an alternative. This paper will examine our experience of conducting online expert advisory groups with young people (aged 14-24) with lived experience of depression and describe challenges and adaptations that need to be considered in order to make the events safe and accessible. Based on our own reflections of the process and feedback from young people taking part, we highlight the grouping of young people, facilitating pre-session nerves, intergroup communication and accessibility of online engagement. Young peoples’ reflections on the value of the advisory groups are also discussed. We conclude by offering suggestions, based on our reflections, for future online research consultations.