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\"The book provides researchers, students, and practitioners with a brief introduction to a health-care model, Community Participatory Involvement (CPI), which for 20 years has proved successful in fighting global health problems. CPI differs from other community-based models in that it involves a unique synergy of local, civil, and political authorities. Using a South American cholera epidemic as an example, the book -explains in step-by-step detail how the CPI model is used; -includes teaching activities, a list of important tools, and model workshops; -demonstrates how the CPI model can be replicated to deal with a diverse range of public concerns, from the control of infectious diseases to animal husbandry to teacher education\"-- Provided by publisher.

In a modern democracy, a public health system includes mechanisms for the provision of expert scientific advice to elected officials. The decisions of elected officials generally will be degraded by expert failure, that is, the provision of bad advice. The theory of expert failure suggests that competition among experts generally is the best safeguard against expert failure. Monopoly power of experts increases the chance of expert failure. The risk of expert failure also is greater when scientific advice is provided by only one or a few disciplines. A national government can simulate a competitive market for expert advice by structuring the scientific advice it receives to ensure the production of multiple perspectives from multiple disciplines. I apply these general principles to the United Kingdom’s Scientific Advisory Group for Emergencies (SAGE).

Context The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness‐related concerns and that involves children as ‘co‐researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. Objective In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. Results We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research. Conclusion Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities.

Background Engaging youth throughout the research process improves research quality and outcomes. Youth advisory groups provide one way for youth to express their opinions on relevant issues. Objective This study aimed to identify research‐ and health‐related youth advisory groups (‘groups’) in Canada and understand the best practices of these groups. Methods Google searches and supplementary methods were used to identify relevant groups in Canada. Group information was extracted from websites or through interviews with key informants. Results We identified 40 groups. Groups were commonly part of a hospital/healthcare facility, nonprofit/health organization or research group. The majority focused on a specific content area, most commonly, mental health. Over half the groups advised on health services. Members' ages ranged from 9 to 35 years. The number of members ranged from 5 to 130. Interviews (n = 12) identified seven categories relating to group practices: (a) group purpose/objectives, (b) group development, (c) group operations, (d) group structure, (e) adult involvement, (f) membership and recruitment and (g) group access. Challenges and facilitators to the success of groups were described within the following themes: (a) retaining engagement, (b) creating a safe environment and (c) putting youth in positions of influence. Advice and recommendations were provided regarding the development of a new group. Conclusion This study provides a comprehensive overview of research‐ and health‐related youth advisory groups in Canada. This information can be used to identify groups that stakeholders could access as well as inform the development of a new group. Patient or Public Contribution Youth advisory group representatives were interviewed as part of the study.

Introduction Patient and Public Involvement and Engagement (PPIE) is now considered essential to the delivery of high‐quality, patient‐centred and translational research. However, despite widespread recognition of this, PPIE remains poorly understood, inconsistently utilised and inadequately reported. Objective This study aimed to report, discuss and analyse the PPIE activities undertaken within 3DPiPPIn—a randomised control trial investigating the feasibility of using 3D printing to develop customised masks for patients receiving positive airway pressure (PAP) therapy. Emphasis was placed on analysing the wider impacts of these activities, including the impact on Patient Advisory Group (PAG) members. Methods Data were collected from PAG members via 1:1 semi‐structured interviews, which took place either face‐to‐face or online as per members' preference. Interviews were recorded, transcribed verbatim and analysed in NVivo using Braun and Clarke's Six‐Phase Reflexive Thematic Analysis. Results Three PAG members were interviewed; two were conducted remotely via Microsoft Teams, while the third took place face‐to‐face. Analysis resulted in the identification of three themes: ‘Disparate perceptions of PPIE influence in research’, ‘Empowered and enriched through PPIE’ and ‘Navigating the evolving experience and hurdles of PPIE’. PAG members described their influence on the trial as variable, feeling their involvement was impactful in some instances and insignificant in others. Despite this, they unanimously agreed that PAG involvement had a positive personal impact and that their experiences of PPIE were diverse and dynamic. Within the subtheme ‘Supports and stumbling blocks for PPIE’, members reflected on facilitators and barriers to PPIE. For example, the relaxed environment created by the Principal Investigator was seen to have promoted open discussion, while personal challenges sometimes diverted their focus from their role as a PAG member. Conclusion This Reflexive Thematic Analysis explored the impact of PPIE on the 3DPiPPIn trial from the perspective of its PAG members. It exemplifies PPIE best practice and highlights areas for improvement to other researchers, advocating for meaningful rather than tokenistic PPIE. By encouraging excellence in PPIE, this report could enhance public engagement in research and, by demonstrating the impact and importance of quality PPIE, could inspire funders to ensure the provision of adequate PPIE resources. Trial Registration Embedded within the 3DPiPPIn trial (ISRCTN 74082423).

Health research increasingly incorporates public and patient involvement (PPI) to enhance trial inclusivity and relevance, and it is often mandated by funding and regulatory bodies. PPI boosts public engagement with trials and aligns trial objectives more closely with the priorities of the groups they aim to benefit. The Kid’s Trial, an online randomised trial co-created with children, aims to help them better understand what randomised trials are, why they matter, and improve their critical thinking skills. To ensure inclusivity and relevance, we established two PPI groups: the Children’s Research Advisory Group (CRAG) and the Parents’ Research Advisory Group (PRAG). We recruited a representative sample of children and parents from diverse ethnic, geographic, and socioeconomic backgrounds to reflect the trial’s target demographic. We engaged PPI group members through social media and email campaigns aimed at parents of children aged 7 to 12. PPI meetings were conducted online, followed set agendas, and included real-time trial updates, post-meeting feedback surveys, and polls. A PPI compensation plan was established in advance. Online interviews later captured their insights and experiences as PPI partners. Seven family units, comprised of eight children and seven parents, were recruited over 15 weeks from six countries. PPI partners shaped the trial design by contributing to website animations, aesthetic changes, and language adaptations. Interviews were analysed using reflexive thematic analysis to explore the facilitators, challenges, and outcomes of participating in our online research advisory groups. Reflections from researchers and PPI partners demonstrated that participation in the advisory groups enhanced children’s learning and confidence. Many members, including children and adults, experienced unexpected positive outcomes, such as increased scientific literacy, science communication and confidence. Their involvement meaningfully shaped the trial’s development and processes. This study also provides guidance for researchers engaging similar demographics in future PPI activities. Plain English summary Health research now often includes input from the public and patients (Patient and Public Involvement or PPI) to make studies more inclusive and useful. Many funding and regulatory organisations require this. When the public is involved, research studies become more relevant to the people they aim to help. The Kid’s Trial is an online study designed with children to teach them how health research works and help them think critically about health information they encounter. To make sure The Kid’s Trial was inclusive and meaningful, we created two PPI groups made up of children and their parents to help us design it. We used social media and email to recruit a diverse group of children and parents from different backgrounds. These groups met online to discuss the trial, make improvements, and give feedback. They worked on the website, website animations, trial design, and the language we used. The PPI group members were compensated for their time. Seven family units, consisting of eight children and seven parents from six countries, joined the PPI groups. We interviewed group members to understand what worked well, what was challenging, and what they gained from participating in the PPI groups. Children felt that their confidence and learning had improved. Many PPI group members experienced unexpected benefits. Their input significantly influenced the design of The Kid’s Trial. This study also offers valuable advice for researchers seeking to include children and parents as PPI partners in future studies.

Using the case of the Scientific Advisory Group for Emergencies in the United Kingdom as illustration, this essay offers a framework for understanding the role of narratives and competition among narratives in mediating the relationships between scientific advisers and policymakers during the COVID-19 pandemic. Throughout the pandemic, competing judgments about scientific independence and democratic accountability, about the risks of action and inaction, and about the appropriate balance of costs and benefits to society as a whole and to subgroups of the population were filtered through the narrative perspectives of different discourse coalitions. This narrativization of the process had both positive and negative effects. On the one hand, it provided common platforms for the integration of disparate types of knowledge relevant to policymaking. On the other hand, narratives provided platforms for rival coalitions in ongoing contests that left unresolved the central normative questions of distributional fairness and democratic accountability.

Background/Objectives: In November 1999, WHO established the Strategic Advisory Group of Experts (SAGE) on Immunization as a multidisciplinary group of experts to provide high-level recommendations on vaccines and immunization. Methods: This review provides an overview of SAGE’s work in the past 25 years. It further outlines the processes and methods currently used by SAGE and highlights some of its major achievements. Results: SAGE’s global policies have driven action toward eradication, elimination and disease control and addressed the optimization of vaccination and immunization. In total, 27 major policy positions on vaccines/vaccine-preventable diseases have guided global public health. During times of epidemics and pandemics, interim recommendations issued by SAGE have responded iteratively in real-time to provide evidence-driven response policies. SAGE is an adaptive advisory group that has modified its procedures and working approaches to meet the evolving challenges in public health and stay up-to-date with evolving scientific and guideline development standards. Conclusions: Over the last quarter century, SAGE has significantly contributed to shaping the immunization landscape. It has achieved and maintained a high level of integrity and credibility. The advisory group continues to be an authority in global public health, and its recommendations have profound implications for the health of individuals and populations across the globe.

User involvement is increasingly common in health-care research, and the ideal is user participation and influence during all research stages. Here we describe and reflect on the processes and outcomes associated with advisory group–researcher collaboration from a person-centred perspective. When planning a study in which older adults’ experiences of reablement were investigated, older adults with previous first-hand experience of reablement participated in an advisory group. We found that the fostering of healthful relationships, in which experiential and research knowledge are considered complimentary and equitable, and all members have the power to exercise their unique roles, seems to be a prerequisite for the co-creation of knowledge. Also, practical arrangements and social relationships constitute important details that are crucial to ensuring contribution from older adults with health-related conditions. While such individuals may be unable to participate during all stages of a research project, their involvement on an advisory level during the initial stages can increase study quality and relevance. Input from the advisory group members contributed to the improvement of the language in the study information sheet, improvement of the study design, development and validation of the interview guide, and insight into how the interviews should be conducted. The personal knowledge and expertise of the advisory group members, which emanated from their immediate sensitivity, contributed to the person-centredness in the study.

Background Countries are transitioning assets and functions from polio eradication to integrated immunization and surveillance activities. We assessed the extent of linkages between and perceptions of National Immunization Technical Advisory Groups (NITAGs) and National Certification Committees (NCCs) for polio eradication to understand how linkages can be leveraged to improve efficiencies of these expert bodies. Methods During May 2017 to May 2018, we administered a 15-question survey to a NITAG chair or member and an NCC counterpart in all countries of the WHO Regions for Africa (AFR) and for the Eastern Mediterranean (EMR) that had both a NITAG and an NCC. Data were analysed using frequency distributions. Results Of countries with both a NITAG and an NCC ( n  = 44), the response rate was 92% (22/24) in AFR and 75% (15/20) in EMR. Some respondents reported being very familiar with the functions of the other technical bodies, 36% (8/22) for NITAG members and 38% (14/37) for NCC members. Over 85% (51/59) of respondents felt it was somewhat useful or very useful to strengthen ties between bodies. Nearly all respondents (98%, 58/59) felt that NCC expertise could inform measles and rubella elimination programmes. Conclusions We observed a broad consensus that human resource assets of NCCs may serve an important technical role to support national immunization policy-making. At this stage of the polio eradication initiative, countries should consider how to integrate the technical expertise of NCC members to reinforce NITAGs and maintain the polio essential functions, beginning in countries that have been polio-free for several years.