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Abstract Background In recent years, academics have increasingly acknowledged the importance of involving health service users and community stakeholders as active partners in health research. Yet, the involvement of older adults, the largest group of health service users, as research partners remains limited, possibly due to ageist attitudes that devalue older adults’ contributions. During the three years of our Awakening Canadians to Ageism study, we convened an advisory group consisting of older adults and gerontological experts to discuss issues related to ageism, help interpret the study findings, and develop a range of knowledge mobilization strategies to dispel ageism. Methods To understand the experiences of members of the advisory group and solicit recommendations for improving future groups, we conducted a qualitative descriptive study and interviewed 8 older adults and 6 gerontological experts. Data were content analyzed. Results Four categories that were developed to explain participants’ experiences and suggestions for future advisory groups included: organization and management, group experience, suggestions for future advisory groups and moving forward. A key finding was the value that the older adults and gerontological experts ascribed to conversations about the prevalence of ageism and their desire to continue these types of conversations in their personal groups and professional networks. Numerous helpful strategies for future advisory groups were identified, such as enhancing social diversity, both in terms of racial/ethnic/cultural representation and gender. Older adults wanted more “getting to know you time” in meetings and gerontological experts wanted more details about the research process and their role. Conclusions This study’s partnership approach can guide researchers seeking to involve key health service users and community stakeholders in health research and help enact positive social change.

Abstract Engaging young people in research is a promising approach to tackling issues like chronic disease prevention. Our involvement as youth advisors provided valuable experiences, including being at the forefront of change and learning to work within a research team. Furthermore, our experience provides greater insight and learnings for future youth engagement in research.

Background: In recent years, academics have increasingly acknowledged the importance of involving health service users and community stakeholders as active partners in health research. Yet, the involvement of older adults, the largest group of health service users, as research partners remains limited, possibly due to ageist attitudes that devalue older adults' contributions. During the three years of our Awakening Canadians to Ageism study, we convened an advisory group consisting of older adults and gerontological experts to discuss issues related to ageism, help interpret the study findings, and develop a range of knowledge mobilization strategies to dispel ageism. Methods: To understand the experiences of members of the advisory group and solicit recommendations for improving future groups, we conducted a qualitative descriptive study and interviewed 8 older adults and 6 gerontological experts. Data were content analyzed. Results: Four categories that were developed to explain participants' experiences and suggestions for future advisory groups included: organization and management, group experience, suggestions for future advisory groups and moving forward. A key finding was the value that the older adults and gerontological experts ascribed to conversations about the prevalence of ageism and their desire to continue these types of conversations in their personal groups and professional networks. Numerous helpful strategies for future advisory groups were identified, such as enhancing social diversity, both in terms of racial/ethnic/cultural representation and gender. Older adults wanted more "getting to know you time" in meetings and gerontological experts wanted more details about the research process and their role. Conclusions: This study's partnership approach can guide researchers seeking to involve key health service users and community stakeholders in health research and help enact positive social change. Plain English summary: In 2022 we developed an advisory group consisting of older adults and gerontological experts to review the findings of the first stage of our study Awakening Canadians to Ageism and provide guidance on knowledge mobilization and next steps. We interviewed 12 older adults and 6 gerontological experts from our advisory group to learn about their experiences with the group and provide suggestions for future groups. Participants provided feedback on group organization, management and processes, in addition to their experiences and strategies for future advisory groups. Both groups suggested enhancing the social diversity of the group, both in terms of racial/ethnic/cultural representation and gender. Older adults wanted more meeting time dedicated to getting to know the other groups members and gerontological experts wanted more details about the research process and their role. [ABSTRACT FROM AUTHOR]

Engaging young people in research is a promising approach to tackling issues like chronic disease prevention. Our involvement as youth advisors provided valuable experiences, including being at the forefront of change and learning to work within a research team. Furthermore, our experience provides greater insight and learnings for future youth engagement in research. Plain English Summary: We are a group of 16 diverse young people from New South Wales, Australia, who are passionate about youth health. In 2021 and 2022, we formed the Health Advisory Panel for Youth at the University of Sydney (HAPYUS, pronounced 'Happy Us') working with researchers on projects to prevent chronic diseases in young people. We brainstormed health issues from our own experiences and other research and summarised them into the top three youth health concerns. From these, we helped develop and test programs to support healthy behaviours in young people. We used scientific and public events to present our findings. Finally, we presented our results in a research paper and through traditional and social media. One of the most rewarding experiences was the opportunity to be part of all stages of the research process of improving youth health especially because COVID-19 and social media changed the way we need to think about youth mental and physical health. We also learned how to work together amongst ourselves as young people and within a research team. We hope that other young people can learn from our experiences and feel inspired to become active contributors in projects for meaningful change in the lives of young people. [ABSTRACT FROM AUTHOR]

Abstract Our comment discusses our experience establishing a youth advisory group focused on chronic disease prevention research. The comment highlights three key learnings: the need for researchers to adapt their working style, the importance of redefining the power dynamics, and disrupting traditional research structures to align with co-researcher engagement models.

Abstract Background In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period. Methods We conducted year-end surveys and interviews of group members to understand parents’ perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically. Results Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group’s purpose, offering sufficient context for discussion items, and providing feedback about how members’ input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group’s current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group’s membership and an interest in hearing more about how the research program’s activities fit into the broader healthcare system and their impacts on health outcomes. Conclusions Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.

Our comment discusses our experience establishing a youth advisory group focused on chronic disease prevention research. The comment highlights three key learnings: the need for researchers to adapt their working style, the importance of redefining the power dynamics, and disrupting traditional research structures to align with co-researcher engagement models. Plain English Summary: In this comment, we share our insights from working with a youth advisory group in adolescent health research. Our comment supports our research paper on co-designing an online health study, "Health4Me." The youth advisors worked with us for a year, during which we also studied leadership and other outcomes. Adolescent health is gaining worldwide attention. Health researchers see the value of working with young people on issues that affect them. To address this need, we formed the Health Advisory Panel for Youth at the University of Sydney. We motivated young people through building new skills and leadership training, rather than only focusing on improved health outcomes or health knowledge. Here are our key lessons as researchers: Flexibility: We changed our approach to support online teamwork with young people, offered payment and worked around their schedules. Changing power dynamics: We empowered young people by engaging them in decisions and involved them in co-authoring papers and presentations. Challenging traditional structures: To support youth- as co-researchers, we used existing sources of funding and offered mentoring. In conclusion, we highlight practical ways of working with a youth advisory group in health research. Our teamwork led to a youth digital health program, published essays, and future research ideas. It is important for researchers to actively involve and support young people in shaping research that affects them. [ABSTRACT FROM AUTHOR]

Background: In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period. Methods: We conducted year-end surveys and interviews of group members to understand parents' perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically. Results: Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group's purpose, offering sufficient context for discussion items, and providing feedback about how members' input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group's current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group's membership and an interest in hearing more about how the research program's activities fit into the broader healthcare system and their impacts on health outcomes. Conclusions: Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs. Plain English summary: We developed a parent advisory group in 2016 to support our research program in knowledge translation (KT, i.e., sharing research in accessible ways to inform decision-making) for child health. The purpose of the group is to involve parents in co-developing, evaluating, and sharing KT tools (e.g., videos, infographics). The group has also worked with researchers to inform methods and provide input on research projects and products. The group has been running for seven years and has involved different types of evaluations, including parent surveys and interviews. Parents had generally positive views of their experience with the group (including the group's management, interactions with researchers, etc.) and their responses mostly improved over the years. Based on parents' feedback, we made changes to improve the group's operations, such as changing the frequency and location of meetings, regular communications about the group's purpose, offering more context and time for individual discussion items, and providing feedback to parents about how their input was used. Parents regularly expressed a desire for more diversity in the group's membership. They also expressed an interest in hearing more about how the research program fit into the broader healthcare system and impacts on health outcomes. We have learned that it takes a large amount of time, effort, and funding to run the group; however, the parent contributions have been valuable and wide-reaching. We feel that the evaluations and responsive changes to the group over time have been essential to sustain and foster meaningful engagement and achieve the group's objectives. [ABSTRACT FROM AUTHOR]

Abstract Introduction The study of resilience among transition-age youth (aged 16–29 years) living with serious mental illness (SMI) has provided a promising new direction for research with the capacity to explore individuals’ strengths and resources. However, variability in how resilience is defined and measured has led to a lack of conceptual clarity. A comprehensive synthesis is needed to understand current trends and gaps in resilience research among this population. The purpose of the current study was to map how resilience has been conceptualized and operationalized among transition-age youth with SMI, explore resilience factors and outcomes that have been studied, and recommend areas for future research. Methods A six-stage scoping review methodology was used to systematically identify relevant empirical literature across multiple databases (MEDLINE, EMBASE, PsycINFO, AMED, CINAHL, Scopus), addressing transition-age youth diagnosed with SMI and resilience. Topic consultation and reaction meetings were conducted to gather feedback from transition-age youth with SMI, researchers, and clinicians during the review process to enhance the applicability of the review findings. A meta-narrative approach was used to organize included studies into research traditions (i.e., paradigms of inquiry with similar storylines, theoretical and methodological orientations). Resilience factors and outcomes, and the consultative meetings, were analyzed using content analysis. Results Twenty-four studies met inclusion criteria (14 quantitative, 9 qualitative, 1 mixed-method). Four research traditions were identified, each contributing a unique storyline which conceptualized and operationalized resilience in slightly different ways: Stress Adaptation, Person-Environment Interactions, Recovery-Focused, and Critical and Cultural Perspectives. Resilience factors and outcomes were most commonly evaluated at the individual-level or within the immediate environment (e.g., personal characteristics, social support networks). Limited research has explored the influence of macro-level systems and health inequalities on resilience processes. Results from the consultative meetings further demonstrated the importance of health services and sociocultural factors in shaping processes of resilience among youth. Conclusion The present results may be used to inform future work, as well as the development of age-appropriate, strengths-based, and resilience-oriented approaches to service delivery. Interdisciplinary and intersectional research that prioritizes community and youth engagement is needed to advance current understandings of resilience among transition-age youth with SMI.

Abstract While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts. This article reflects on the experiences of academics, collaborators and self-advocacy experts who formed an advisory group for a research project focused on people with learning disabilities’ experiences of renting their own homes. Our paper describes the collaboration, how it changed because of Covid and because of changing relationships, and what worked well and what was challenging. This is in part because these more transparent accounts of working together are sometimes missing from research. We discuss issues relating to bureaucratic research systems which are largely inaccessible to people with learning disabilities and how we approached these. We also highlight the joys and benefits of the research approach that we adopted as well as the challenging and more difficult aspects.

The International Organization for Standardization (ISO)/International Electrotechnical Commission (IEC) Joint Technical Committee (JTC) 1 is an organization established by ISO and IEC and is responsible for international standardization in the field of information technology. This article introduces the activities being addressed by subgroups directly under JTC 1, which were identified in Resolutions from recent ISO/IEC JTC 1 Plenaries. [ABSTRACT FROM AUTHOR]

While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts. This article reflects on the experiences of academics, collaborators and self-advocacy experts who formed an advisory group for a research project focused on people with learning disabilities' experiences of renting their own homes. Our paper describes the collaboration, how it changed because of Covid and because of changing relationships, and what worked well and what was challenging. This is in part because these more transparent accounts of working together are sometimes missing from research. We discuss issues relating to bureaucratic research systems which are largely inaccessible to people with learning disabilities and how we approached these. We also highlight the joys and benefits of the research approach that we adopted as well as the challenging and more difficult aspects. Plain English summary: This article tells the story of a research project about people with learning disabilities who rent their own homes in England. The article is not so much about the research findings but more about how the research team worked together. This group included self-advocacy experts with learning disabilities, research collaborators and academic researchers. At the start of the project, people with learning disabilities were invited to be part of an advisory group. But as the project went on, this group started to challenge the limits of the role and wanted to be more involved. This changed the course of the research—as well as the fact that it was happening at the same time as the Covid pandemic. The group had some difficult issues to deal with including complicated ethics processes, bureaucracy about getting people paid, and disagreements about language and terminology. We had some hard conversations about the words we use in academia and in real life and who gets to do research. We also had lots of fun wearing silly glasses at Christmas and talking about carrier pigeons. In the end we all felt that the way the research was carried out had improved the project overall. [ABSTRACT FROM AUTHOR]

Introduction: The study of resilience among transition-age youth (aged 16–29 years) living with serious mental illness (SMI) has provided a promising new direction for research with the capacity to explore individuals’ strengths and resources. However, variability in how resilience is defined and measured has led to a lack of conceptual clarity. A comprehensive synthesis is needed to understand current trends and gaps in resilience research among this population. The purpose of the current study was to map how resilience has been conceptualized and operationalized among transition-age youth with SMI, explore resilience factors and outcomes that have been studied, and recommend areas for future research. Methods: A six-stage scoping review methodology was used to systematically identify relevant empirical literature across multiple databases (MEDLINE, EMBASE, PsycINFO, AMED, CINAHL, Scopus), addressing transition-age youth diagnosed with SMI and resilience. Topic consultation and reaction meetings were conducted to gather feedback from transition-age youth with SMI, researchers, and clinicians during the review process to enhance the applicability of the review findings. A meta-narrative approach was used to organize included studies into research traditions (i.e., paradigms of inquiry with similar storylines, theoretical and methodological orientations). Resilience factors and outcomes, and the consultative meetings, were analyzed using content analysis. Results: Twenty-four studies met inclusion criteria (14 quantitative, 9 qualitative, 1 mixed-method). Four research traditions were identified, each contributing a unique storyline which conceptualized and operationalized resilience in slightly different ways: Stress Adaptation, Person-Environment Interactions, Recovery-Focused, and Critical and Cultural Perspectives. Resilience factors and outcomes were most commonly evaluated at the individual-level or within the immediate environment (e.g., personal characteristics, social support networks). Limited research has explored the influence of macro-level systems and health inequalities on resilience processes. Results from the consultative meetings further demonstrated the importance of health services and sociocultural factors in shaping processes of resilience among youth. Conclusion: The present results may be used to inform future work, as well as the development of age-appropriate, strengths-based, and resilience-oriented approaches to service delivery. Interdisciplinary and intersectional research that prioritizes community and youth engagement is needed to advance current understandings of resilience among transition-age youth with SMI. [ABSTRACT FROM AUTHOR]

Abstract 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.

Background: The objective of this paper is to describe the activities, challenges and mitigation strategies, lessons learned and reflections on the importance of engagement from the first year of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group and cross-cutting program. EPLED was created to support persons with dementia and care partners to be actively involved in the CCNA research process. Main body: The Advisory Group was formed to work with CCNA researchers and programs to develop new ways to further collaborate and advance the methods of patient engagement in research on dementia. A role profile and recruitment poster were developed and, after interviews, 17 people were invited to join the Advisory Group. We planned three online EPLED meetings to take place between July–August of 2020, with one in-person meeting to be held in Canada. Due to COVID-19, we moved all of these meetings online. In the first year, EPLED and the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. For researchers and people with lived experience of dementia, motivations for patient engagement included challenging stigma, making meaning from their experience (such as building relationships and having their voices heard) and contributing to research. Common challenges to engagement were related to navigating the impact of COVID-19, such as difficulty in getting to know each other and technical issues with video-conference software. We learned that developing trusting relationships, providing education, offering support, being flexible and acknowledging tensions between research, practice and lived experience, were vital to the success of the Advisory Group. Conclusion: The first year of the EPLED Advisory Group demonstrated the potential contributions of people with lived experience of dementia as partners in research. Building these collaborations with individuals and communities—people living with dementia, care partners, researchers and research institutions—has the potential for positive impact across these groups and, ultimately, improve the lives of people living with dementia and their care partners. Plain English summary: In this paper, we describe the development of the Canadian Consortium of Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) cross-cutting program and the first year of the EPLED Advisory Group. EPLED was created to build opportunities for patient engagement in the CCNA's research on dementia. People living with dementia and current/former friends, family and care partners were recruited from across Canada to join the Advisory Group. In the first year, the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. Challenges included the impacts of the COVID-19 pandemic, online meetings, and differing expectations and priorities. Lessons learned and reflections on the importance of engagement are discussed in the context of research on dementia and from the perspectives of researchers and Advisory Group members. [ABSTRACT FROM AUTHOR]

Plain English summary In 2016 we developed a parent advisory group to inform our research program in knowledge translation (i.e., sharing research in accessible ways to inform decision-making) for child health. The group provides input from a parent perspective. We conducted an online baseline survey of parent members and a follow-up online survey 16 months after the group had started. The surveys helped us understand reasons for parents’ participation, what they thought was working well with the group, and areas for improvement. Parents valued the opportunity to provide constructive feedback on research processes and outputs. They felt the meetings were well-organized and the group was open and welcoming. Parents felt that regular and ongoing communication with the researchers was critical for meaningful engagement. To this end, funding to support a dedicated coordinator was considered essential. Parents appreciated that the researchers organized the group around parents’ needs in terms of timing of meetings (evenings) and reimbursement for expenses to attend meetings (travel, childcare). Parents considered this type of group to be unique, particularly as it supports a research program over the long-term rather than for specific projects, and because of the relative maturity in terms of clearly defining group purpose, structure, and engagement approach. The ongoing involvement allows for benefits in terms of building relationships, providing many and varied opportunities to interact, and allowing parents to see how their input is implemented. Finally, an evaluation mechanism with communication of results and a commitment to implement findings is considered critical. Our parent advisory group can provide a model for other researchers or research organizations.

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Snowball, Aiken, Norman, Hykaway, Dempster, Itzhak, McLellan, McGilton and Bethell.)

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. [ABSTRACT FROM AUTHOR]

Background: In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners for our research program. The purpose of this paper is to describe our experiences establishing the group, and results from parent evaluations. Methods: We contacted 191 organizations to recruit parents and caregivers of children who wanted to contribute to child health research. Our initial goal was to recruit 8 to 10 parents who would meet regularly (approximately 8 times per year). We conducted an online baseline survey of members after the first two meetings to understand motivations for participating and early experiences. Sixteen months later we conducted another online survey to identify what was going well and areas for improvement. Results: Twelve parents initially joined the group. The baseline survey (n = 9 complete) identified motivations for participation: wanting a patient/family voice in health research; personal experience accessing health system for child's care; wanting to improve healthcare communications. Concerns about participation included: having sufficient time to attend meetings; whether contributions would be worthwhile; and uncertainty about how the group's input would be used in practice. Parents identified aspects that were working well: opportunity to provide constructive feedback; diversity among parents involved; well-run and organized meetings (agenda and materials sent prior to meeting, skilled facilitation, adequate time for discussion). Items parents identified as not working well were: fluctuating attendance; not knowing others in the group; challenges if attending remotely. At follow-up, there were seven active members. The follow-up survey (n = 5 complete) identified positive feedback related to group dynamics (e.g., collegial, everyone participates) and organization of meetings. Suggestions for improvement included increasing membership, regular attendance, and providing adequate information/context to allow meaningful input. Conclusions: Our experience establishing a parent advisory group and evaluation of the group by parent members have yielded tremendous insights around involving parents and patient proxies in health research. The parent advisory group is a dynamic entity requiring ongoing communication between researchers and members. Effective means of evaluating engagement is essential to ensure it is meaningful. Dedicated time, funding and resources are required for success. Plain English summary: In 2016 we developed a parent advisory group to inform our research program in knowledge translation (i.e., sharing research in accessible ways to inform decision-making) for child health. The group provides input from a parent perspective. We conducted an online baseline survey of parent members and a follow-up online survey 16 months after the group had started. The surveys helped us understand reasons for parents' participation, what they thought was working well with the group, and areas for improvement. Parents valued the opportunity to provide constructive feedback on research processes and outputs. They felt the meetings were well-organized and the group was open and welcoming. Parents felt that regular and ongoing communication with the researchers was critical for meaningful engagement. To this end, funding to support a dedicated coordinator was considered essential. Parents appreciated that the researchers organized the group around parents' needs in terms of timing of meetings (evenings) and reimbursement for expenses to attend meetings (travel, childcare). Parents considered this type of group to be unique, particularly as it supports a research program over the long-term rather than for specific projects, and because of the relative maturity in terms of clearly defining group purpose, structure, and engagement approach. The ongoing involvement allows for benefits in terms of building relationships, providing many and varied opportunities to interact, and allowing parents to see how their input is implemented. Finally, an evaluation mechanism with communication of results and a commitment to implement findings is considered critical. Our parent advisory group can provide a model for other researchers or research organizations. [ABSTRACT FROM AUTHOR]

Background: Dysphagia is common in adults living with neuromuscular disease (NMD). Increased life expectancy, secondary to improvements in standards of care, requires the recognition and treatment of dysphagia with an increased priority. Evidence to support the establishment of healthcare pathways is, however, lacking. The experiences of people living with NMD (pplwNMD) and their caregivers are valuable to guide targeted, value-based healthcare., Objective: To generate preliminary considerations for neuromuscular dysphagia care and future research in the United Kingdom, based on the experiences of those living with, or caring for, people with NMD., Methods: Two surveys (one for adults living with NMD and dysphagia, and a second for caregivers) were co-designed with an advisory group of people living with NMD. Surveys were electronically distributed to adults living with NMD and their caregivers between 18th May and 26th July 2020. Distribution was through UK disease registries, charity websites, newsletters, and social media., Results: Adults living with NMD receive little information or education that they are likely to develop swallowing difficulties. Most respondents report wanting this information prior to developing these difficulties. Difficulties with swallowing food and medication are common in this group, and instrumental assessment is considered a helpful assessment tool. Both adults living with NMD and caregivers want earlier access to neuromuscular swallowing specialists and training in how best to manage their difficulties., Conclusions: Improvement is needed in the dysphagia healthcare pathway for adults living with NMD to help mitigate any profound physical and psychological consequences that may be caused by dysphagia. Education about swallowing difficulties and early referral to a neuromuscular swallowing specialist are important to pplwNMD and their caregivers. Further research is required to better understand the experiences of pplwNMD and their caregivers to inform the development of dysphagia healthcare pathways.

It is widely recognized that there is a need for engagement between stakeholders to establish locally accepted strategies for sustainable coastal management solutions around the world. Adaptive management approaches have emerged as one of the preferred mechanisms in coastal zone management. Central to the application of adaptive management is the effective engagement of stakeholders to encourage participatory decision-making. There are relatively few studies which have analysed the effectiveness and dynamics of stakeholder groups to establish sustainable adaptive management in practice, and identify what opportunities and challenges can arise from such collaborative approaches. This research critically evaluates stakeholder engagement in the adoption of adaptive management at East Head, England. The study has identified significant issues and opportunities that have arisen throughout the decision-making process. It has found that a major challenge has been to achieve acceptance of the mechanism of adaptive management, particularly in relation to aspects of uncertainty. However, it is of critical note that the advisory group in question has become a valuable vehicle in bringing together key stakeholders throughout all stages of the adoption of the adaptive management approach. It is suggested that this approach, has gradually reduced conflict through building knowledge, gaining trust and ultimately achieving acceptance. A widely applicable management model and recommendations for best practice are presented as derived from the views of the advisory group itself. This model has the potential to develop a more dynamic, holistic and sustainable approach to coastal governance both in the UK and at other locations further afield. [ABSTRACT FROM AUTHOR]

Objective: This rapid review aims to identify how Indigenous research governance is conceptualised, implemented and documented within Australian Indigenous health research studies., Methods: We searched for peer-reviewed English-language articles in two databases and for web-based grey literature published from database inception to November 2021. Reference lists were searched to identify additional articles. Data relating to research governance were extracted and analysed thematically., Results: A total of 1120 records were screened, and 27 articles were included. Most articles providing detailed description of Indigenous research governance activities were qualitative studies (n=15, 55.6%). Key themes included members are experts; respectful relationships; flexibility; and key logistic considerations (nuts 'n' bolts)., Conclusions: Although Indigenous research governance is recognised as an essential part of ethical research, activities and contributions made by Indigenous reference group (IRG) members are underreported. This important work needs greater visibility in the published literature to share best practice in Indigenous research governance that foregrounds Indigenous expert knowledge, perspectives, and experiences., Implications for Public Health: The study provides a synthesis of factors to consider when establishing and facilitating an IRG for research with Indigenous communities. This has implications for researchers who can adapt and apply the findings to their practice., (Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.)

Many experts on vaccination are convinced that efforts should be made to encourage increased collaboration between National Immunization Technical Advisory Groups on immunization (NITAGs) worldwide. International meetings were held in Berlin, Germany, in 2010 and 2011, to discuss improvement of the methodologies for the development of evidence-based vaccination recommendations, recognizing the need for collaboration and/or sharing of resources in this effort. A third meeting was held in Paris, France, in December 2014, to consider the design of specific practical activities and an organizational structure to enable effective and sustained collaboration. The following conclusions were reached: (i) The proposed collaboration needs a core functional structure and the establishment or strengthening of an international network of NITAGs. (ii) Priority subjects for collaborative work are background information for recommendations, systematic reviews, mathematical models, health economic evaluations and establishment of common frameworks and methodologies for reviewing and grading the evidence. (iii) The programme of collaborative work should begin with participation of a limited number of NITAGs which already have a high level of expertise. The amount of joint work could be increased progressively through practical activities and pragmatic examples. Due to similar priorities and already existing structures, this should be organized at regional or subregional level. For example, in the European Union a project is funded by the European Centre for Disease Prevention and Control (ECDC) with the aim to set up a network for improving data, methodology and resource sharing and thereby supporting NITAGs. Such regional networking activities should be carried out in collaboration with the World Health Organization (WHO). (iv) A global steering committee should be set up to promote international exchange between regional networks and to increase the involvement of less experienced NITAGs. NITAGs already collaborate at the global level via the NITAG Resource Centre, a web-based platform developed by the Health Policy and Institutional Development Unit (WHO Collaborating Centre) of the Agence de Médecine Préventive (AMP-HPID). It would be appropriate to continue facilitating the coordination of this global network through the AMP-HPID NITAG Resource Centre. (v) While sharing work products and experiences, each NITAG would retain responsibility for its own decision-making and country-specific recommendations. [ABSTRACT FROM AUTHOR]

The aim of this paper is to inform and advise researchers on the practical issues associated with involving stroke patients and their carers in research. Background The involvement of patients and carers in research is increasingly recognised as important, yet researchers are often unclear on how to do this in practice. This is particularly evident in the field of stroke care, where there is limited information available about how to involve stroke patients and their carers in research effectively, or about the difficulties associated with this. Data source Experience of developing a patient and carer advisory group. Review methods This paper reflects on the process the authors undertook when developing a stroke patient and carer advisory group as part of a research study exploring the effect of interprofessional team working on the experiences and outcomes after stroke of patients and carers. Discussion This paper discusses the challenges and the benefits of developing a stroke patient and carer and advisory group, and offers advice to other researchers undertaking a similar process. It aims to provide some practical suggestions that may aid researchers wishing to involve stroke patients and carers in their research. Conclusion Stroke patients are likely to be older and have long-term physical disabilities or communication problems that may make their involvement in research more challenging to implement. However, with planning and consideration and the allocation of sufficient time and resources, stroke patients and their carers can be effectively involved, resulting in benefits to the research process and output, and to researchers, patients and carers. Implications for practice/research Pay attention to planning and the practical details of involving stroke patients and their carers in research, ensuring that meetings are arranged in an accessible venue. Use straightforward language in all forms of communication. Listen carefully to their views and perspectives and be prepared to make changes to the study and revise methods if appropriate. [ABSTRACT FROM AUTHOR]

Increasingly in recent years, the involvement of disabled people as co-researchers has been regarded as ‘good practice’. This has been informed by growing participatory and emancipatory research paradigms as well as user-focused policy imperatives. The benefits of these shifts apply to the research itself (improved definition, direction, applicability and impact), to non-disabled researchers (personal growth and enhanced understanding of the reflexive research process), to people with disabilities involved as researchers or collaborators (personal growth and enhanced opportunities), and (if externally funded) to the funder whose ways of operating are likely to be challenged profoundly. In this paper, Ann Lewis, Sarah Parsons and Christopher Robertson (based at the University of Birmingham), Anthony Feiler, Beth Tarleton and Debby Watson (based at the University of Bristol) and Richard Byers, Jill Davies, Ann Fergusson and Claire Marvin (based at the University of Cambridge) discuss the work of three independent research teams carrying out concurrent projects. The authors share their experiences of trying to take seriously the participation of disabled people in research. All three projects were informed, to a significant degree, by their respective reference groups of disabled people. The work of these groups in each of the three projects is outlined and then discussed in relation to five common themes: formal contracts with members of reference groups; considerations concerning drawing on an established reference group; planning for reference group involvement; style of reference group involvement; and building on good practice. [ABSTRACT FROM AUTHOR]

This is the second of three papers reporting on a study of the work of an ethical advisory group working within a learning disability service. The part of the study reported in this paper sets out to investigate the ethical content of the group's output by studying the content of its discussions, and its processes of decision-making and conflict management. Three consecutive meetings of the group were recorded and observed. Also, individual members were interviewed. Meeting transcripts were subjected to a qualitative analysis. This revealed that a wide range of ethics-related concepts were articulated in the meetings, and a productive balance seemed to be achieved between conflicting principles. The major tension was between the ethics of care and protection, and the ethics of autonomy. The concept of duty was only expressed in the context of the duty of care, and the ethics of character and virtue were absent, perhaps justifiably. Overt conflict was almost entirely absent, and probably for this reason opinions were sometimes expressed without supporting argument. However the conflict of principles supplied the element of controversy recommended in the literature. The group also showed a willingness to subject its parent organization's actions to ethical analysis. [ABSTRACT FROM PUBLISHER]

The paper examines the concept of an interprofessional ethical advisory group and the contribution which it might make towards improving care provision for people with learning disabilities. It describes briefly the policy and professional practice background and outlines the aims and functions of such a group, focusing upon that established within the Southern Derbyshire Community NHS Trust. [ABSTRACT FROM PUBLISHER]