Search results

Both authors have been involved as lay members in research and other activities for a number of years, ensuring they represent the views of members of the public. This chapter identifies what is, and what is not, patient and public involvement as well as highlighting the importance of involving members of the public in all aspects of the research process. Best practice is explored as identified in the UK Standards for Public Involvement 2019 and the UK Policy Framework for Health and Social Care Research 2020. The implications of the Mental Capacity Act and its wording on research matters are also considered. Case studies have been incorporated to highlight the impact of involving patients and members of the public in all aspects of the research process. These include the lessons learnt by researchers and lay members of the team. The aspiration is to move towards more collaboration between members of the public and researchers; therefore, we discuss co-production of research or community-based participatory research (CBPR). We highlight the need for a better partnership between researchers and members of the public. The benefits of this are explored along with the consequences for all involved.

Purpose – The chapter aims to understand what kind of policy approach has been more successful in facilitating the involvement of patients and the public in the design and provision of health-care services at the local level and the explanatory factors justifying the implementation outcome.Methodology – By applying Richard Matland's ambiguity/conflict policy implementation model, the chapter analyses the impact of a number of policies introduced after 1997 in the English National Health Service that targeted final users and the local population in decision-making processes.Findings – The evidence shows that policies emphasising the importance of context-specific contingencies can be more effectively implemented when room for interpretation and discretion in selecting the appropriate means for involvement is given. In this way, the overall aims/purposes of health policies can be locally reshaped by allowing the adoption of flexible strategies within the implementation process.Practical implications – A strong leadership at the top of public sector organisations and, in particular, from the board of directors is needed to steer and facilitate a consensus oriented outcome in organisational decision-making processes that aim to incorporate the views and opinions of patients and the public.Social implications – Local initiatives in increasing participation, for specific purposes, are bound to be more successful than a general initiative, expecting comparatively uniform implementation.

The aim of this chapter is to discuss the complexities and ambiguities of health-related citizenship in the neoliberal era. The scholarly discussions investigating the impact of neoliberalism on health and health care have primarily focused on the power of the neoliberal system. At the same time, the capacity of patients and citizens to act against neoliberal principles has been rarely discussed. Against this backdrop, we explore the ways in which civically engaged patients and citizens cope with neoliberal governance. To do so, we focus on the Czech context, as one that is not narrowly dominated by market-driven neoliberal logic but that blurs the distinction between marketisation and social protection. More specifically, we address the following two questions: What are the reactions of citizens and patients to the imperatives of neoliberalism? What are the implications for our understanding of health-related citizenship in the neoliberal era? Our analysis is underpinned by interviews and observations of public and patient involvement in the Czech Republic. Furthermore, the data gathered from interviews were enriched through a review of available documents, including media articles, policy briefs, political statements and websites. We conclude that the neoliberal era is not only connected with the emergence of individualised, conscious citizens whose health is governed at a distance, but also with the occurrence of collectively organised, health-care conscious citizens who problematise the nature of contemporary health-care governance. We thus explain and illustrate how neoliberal ideology is imprinted on the behaviour of patients and citizens, as well as how they resist and strategically appropriate neoliberal imperatives.

Science is too important to be left solely to scientists, and so the public need to be involved in the design, funding, delivery and implementation of health research, and in discussions about the ethics of research. Since the 1960s, the United Kingdom and many other countries have included scientists from outside health care in various roles in health care research, as well as nonscientists, ordinary citizens, patients and carers. In the last 20 years, these roles have increased in number and range, but significant challenges remain in ensuring that research is always conducted in an ethical fashion. Errors arise when it is assumed that research is ethical because it has passed a single test rather than being subject to constant vigilance; when academic training on its own is regarded as sufficient to guarantee ethical conduct; when pontification about sophisticated dilemmas ignores fundamental matters of equity and helpfulness and when there is an absence of curiosity about the value positions of others (Boaz et al., 2016). We argue in this chapter that in every setting, citizens have the potential to contribute to ethical debates, whether they assist in establishing priorities for research funding, serve as research funding co-applicants, take the lay member places on Research Ethics Committees and Steering Committees, collect and analyze data or co-author academic papers.

In this chapter, we consider collaborative models of engaged research in comparison to models of team science that include persons with lived experience of the topic area as team members. ‘Co-led’, ‘co-design’ and ‘co-research’ are all terms used in the literature with distinct, but not precise, definitions and approaches. These collaborative models tend to describe methods that allow those with lived experience to be treated differently than other academic members of the research team. Power imbalances between those with lived experiences and researchers persist in such models, in spite of researcher efforts. For example, persons with lived experience are often described as being compensated with gift cards which may be welcomed but can be perceived as diminishing their role and contribution. In contrast, participatory team science involves persons with lived experience as full members of the research team. In the model that we propose, power is balanced through mutual planning and consensus-based decision-making. We contend that using participatory team science advances research through egalitarian consideration of team members' perspectives of the research problem and the designs necessary to knowledge development.

User involvement and co-production are imperative to the design, delivery and evaluation of service provision. This chapter provides a brief introduction to these concepts as they relate to mental health, addiction and dual diagnosis. This occurs through an exploration of models of user involvement, particularly, Arnstein’s ladder of participation and MHERs engagement continuum. This is followed by exploring the benefits of user involvement at both a micro and macro level. Co-production – as the highest form of participation is also introduced followed by how these concepts are noted within policy. These concepts are imperative to the creation of a recovery-orientated service that meets the needs of the whole person and their supporters.