He/She/They - gender inclusivity in developing and using health-related questionnaires: a scoping review.

PURPOSE: To ensure the recognition and participation of all potential respondents in health research, surveys and care, including LGBTQIA + broadly, and trans people, specifically, the use of inclusive language should be considered. This scoping review aimed to identify and describe strategies considered for gender inclusivity in development and use of health questionnaires and Patient Reported Outcomes Measures (PROMs). METHODS: A systematic search of peer reviewed publications between January 2000 and September 2022 was conducted in Scopus, ProQuest Central, Ovid Medline (PubMed and EBSCO). Two reviewers independently screened identified publications titles and abstracts, followed by full text screening and data extraction from eligible articles. RESULTS: The search of over 5000 publications, retained 18; most acknowledged gaps in representation and advocated for gender-inclusive language. Eight articles discussed exclusion from health care and health research for gender minority groups due to the use of gendered language. Improved reliability, validity and response rates were associated with the use of gender-neutral language in seven articles. Only one article reported finding irritation among cisgender males when non-binary gender response options were used. One paper, focussing on instruments for Rheumatoid Arthritis, discussed gaps in representation if diverse gender identities were not considered when developing PROMs. CONCLUSION: This scoping review points to the importance of adopting gender-inclusive language in health questionnaires and surveys to reduce the risk of excluding gender minority groups. Despite finding very few specific examples of how others have used gender-inclusive language in health questionnaires, many strengths of gender-inclusive language usage were identified.

People from the LGBTQIA + communities are often excluded from health research and from completing heath surveys as they are not able to identify with the questions about male or female genders. This scoping review aimed to examine the literature for any strategies developers of health questionnaires may have come up with to ensure inclusion of all demographic groups. Most of the identified literature highlights the importance of adopting gender-inclusive language in health questionnaires to reduce the risk of excluding gender minority groups. Despite many strengths of gender-inclusive language usage being identified, only a few specific examples were identified of how others have used gender-inclusive language in health questionnaires.

A scoping review of resilience among transition-age youth with serious mental illness: tensions, knowledge gaps, and future directions.

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.

Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography.

INTRODUCTION: Consumer and community involvement (CCI) encompasses the range of consumer engagement activities across the research cycle. Research advisory groups (RAGs) are a common method of CCI that may empower the consumer voice in research. However, there is limited evaluation of RAGs to guide occupational therapists considering this as a CCI strategy in research. The aim of this study was to explore the processes and outcomes of a RAG partnership for an eDelphi study. METHODS: Rapid ethnography enabled a rich, thick description of the RAG through triangulation of field notes, a monthly research team log, focus groups, and an individual interview. Data were analysed using reflexive thematic analysis. Recruitment targeted consumers, health service staff, and academics with experience in CCI to enhance the diversity of perspectives guiding the eDelphi study. The RAG met four times over 4 months. FINDINGS: Seven diverse RAG members were recruited resulting in a RAG of 12 members, including the research team that included two consumers. Reflexive thematic analysis resulted in an overarching theme: Different in so many ways, which reinforced that authentic CCI in research continues to be rare even for stakeholders with experience in CCI. There were four subthemes: Set up for success, Authentic and capable facilitation, Structures and strategies for genuine partnerships, and A ripple effect of benefits. Findings added to the limited research regarding RAGs and highlighted that a short-term RAG with 12 diverse stakeholders was an effective strategy to foster mutually beneficial and meaningful collaboration. Partnering with two consumer co-researchers in RAG planning, implementation, and evaluation was central to success. CONCLUSION: Findings demonstrated that with careful co-planning and recruitment, capable facilitation with support of a committed research team (inclusive of consumers), and empowering meeting processes and structures, a short-term RAG resulted in many benefits to participants and enhanced research outcomes.

Reflective insights from developing a palliative care children and young people's advisory group.

BACKGROUND: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. AIM: To plan and deliver a Young People's Advisory Group in palliative care and health research at a secondary school. FINDINGS: Attending an after-school 'Health and Social Research Methods Club' for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. CONCLUSION: This project has equipped researchers with skills and provided a structured template for future Young People's Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

Research- and health-related youth advisory groups in Canada: An environmental scan with stakeholder interviews.

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.

Strengthening National Immunization Technical Advisory Groups in resource-limited settings: current and potential linkages with polio national certification committees.

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.

Co-producing research with youth: The NeurOx young people's advisory group model.

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.

Sustainability Index (S-Index): A tool for use in the evaluation and planning of institutional animal collections.

Maintaining sustainable living collections is at the core of every zoo's and aquarium's mission. In spite of increasing awareness of sustainability challenges, few practical applications to support collection sustainability have been developed. In addition, much of the onus to address issues regarding collection sustainability has fallen to regional zoo associations, rather than on individual collection managers, creating a "tragedy of the commons." Responsibility for sustainability, however, ultimately defaults to each individual institution; as active participants in an association and the population management system, other institutions are the most reliable source of animals. Each collection manager must ensure that their collection contributes to association-wide sustainability. With this in mind, a sustainability index tool, S-Index, has been developed using basic demographic concepts and novel metrics for institutional collection evaluation. Furthermore, combining S-Index data across facilities allows the evaluation of the sustainability of individual taxa or taxonomic groups within the Association. An S-Index analysis of 27 Association of Zoos and Aquariums member avian collections over ten years demonstrates the use of this analytical tool.

'We are the eyes and ears of researchers and community': Understanding the role of community advisory groups in representing researchers and communities in Malawi.

Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group (CAG) members' selection processes and functions in Malawi. A qualitative research design was used; two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members' abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement.

ATAGI targeted review 2023: Vaccination for preventing influenza in Australia.

Abstract: Annual seasonal influenza epidemics cause substantial disease and economic burden worldwide. During the coronavirus disease 2019 (COVID-19) pandemic in 2020 and 2021, influenza activity significantly declined. However, influenza resurged in Australia following the relaxation of non-pharmaceutical interventions, with increased influenza virus circulation in early 2022 coinciding with the SARS-CoV-2 Omicron BA.2 variant wave. Together with other respiratory virus diseases, these disease impacts on the Australian population and healthcare system have re-emphasised the importance of influenza vaccination and control. We aim to provide an overview of the current seasonal influenza vaccination program in Australia and summarise evidence and considerations underpinning potential future immunisation strategies. Influenza causes disproportionately higher morbidity and mortality in young children and older adults. Other populations at elevated risk from influenza include Aboriginal and Torres Strait Islander peoples, pregnant women, and people with certain underlying medical conditions. All Australians aged ≥ 6 months are recommended to receive influenza vaccine every year. The National Immunisation Program (NIP) provides free vaccine for eligible at-risk populations. While approximately 70% of older adults had received influenza vaccine in 2022, coverage in other age groups remains suboptimal. There are several key unmet needs and challenges, but also potential strategies for enhancing the influenza vaccination program in Australia. Improved monitoring and evaluation, including the use of relevant linked datasets for such purposes, is imperative to better understand variations in coverage and vaccination impact in specific populations. Adoption of evidence-based strategies, such as culturally appropriate resources that consider the characteristics of diverse Australian populations, may also help to achieve higher vaccine coverage rates. Additionally, greater vaccine uptake across the population could be facilitated by expanding the NIP-eligible population where cost-effective, and adopting the use of more effective and different types of vaccines when available.

Experiences from youth advisors in chronic disease prevention research.

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.

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.

Direct quantitative comparison of benefits and risks of COVID-19 vaccines used in National Immunization Technical Advisory Groups Guidance during the first two years of the pandemic.

INTRODUCTION: The balance of benefits and harms of vaccines are assessed by regulatory agencies and National Immunization Technical Advisory Groups (NITAGs) to inform vaccine authorization or guidance. The Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach has been adopted by many NITAGs to develop recommendations. During the COVID-19 pandemic, several NITAGs additionally used direct quantitative comparisons (DQCs) between benefits and risk of vaccination with or without a GRADE framework to support timely decision-making relating to emerging safety signals. This study aimed to document the role of DQCs as novel tools in NITAGs' work by identifying situations where DQCs have been clearly leveraged in NITAG guidance, as well as identifying their strengths and limitations. METHODS: The MEDLINE database and NITAGs' websites listed in the Global NITAG Network were searched for NITAG publications on COVID-19 vaccines. Publications were included if a DQC between benefits and risks of any COVID-19 vaccine was explicitly used for NITAG decision-making. Two reviewers independently assessed publication eligibility and extracted data. A narrative description of the role of DQCs in NITAG guidance, DQCs' methods and limitations was conducted. RESULTS: Overall, 23 publications with 18 DQCs used by seven NITAGs were included. Situations prompting these publications included new safety signals (n = 7), additional information available on previously identified safety signals (n = 4) and changing contexts (n = 15) (e.g., vaccine supply, and epidemiology). DQC simplicity made them accessible, timely, and allowed for transparent communication. DQCs heavily relied on assumptions making them sensitive to changes in model parameters. DQCs limitations made them not easily transferable to other contexts and they quickly became obsolete in the evolving context of the COVID-19 pandemic. CONCLUSIONS: The use of DQCs by NITAGs during the COVID-19 pandemic allowed for rapid evidence-based decision-making in an evolving environment while maintaining public trust. However, if their use becomes standard practice, efforts should be made to address their limitations.

Engaging adolescents in chronic disease prevention research: insights from researchers about establishing and facilitating a youth advisory group.

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.

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.

Living with Dysphagia: A Survey Exploring the Experiences of Adults Living with Neuromuscular Disease and their Caregivers in the United Kingdom.

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.

Harnessing real-life experiences: the development of guidelines to communicate research findings on Developmental Coordination Disorder/dyspraxia.

Developmental Coordination Disorder (DCD), also known as dyspraxia, affects 5-15% of school-aged children (Hamilton and Sutton, Am Fam Physician 66:1435, 2002) and significantly impacts a child's ability to learn motor skills and perform everyday activities efficiently and effectively (Zwicker et al., Eur J Paediatr Neurol 16:573-81, 2012). These motor deficits can have a negative impact on academic performance, vocational choices and leisure pursuits (Zwicker et al., Eur J Paediatr Neurol 16:573-81, 2012) and profoundly impact quality of life (Izadi-Najafabadi et al., Res Dev Disabil 84:75-84, 2019). DCD persists into adulthood (Kirby et al., J Adult Dev 18:107-13, 2011), impacting motor as well as emotional and behavioural status (Tal Saban and Kirby, Curr Dev Disord Rep 5:9-17, 2018). Despite the continued increase in research in the field of DCD, awareness of DCD remains poor (O'Kelly NL., From invisibility to invincibility: Guidelines for supporting families through the diagnosis and journey with developmental coordination disorder, 2012) even though it has higher prevalence rates when compared to, for example, autism spectrum disorder (Yan et al., J Autism Dev Disord :1-7, 2024), which in part may be due to a lack of accessible research findings. A fundamental feature of the research process is disseminating research findings. This should involve community members in design and delivery to ensure the accessibility of research findings.In 2022 the DCD-UK committee established a DCD Research Advisory Group (DCD-RAG) which met over the course of 12 months to: (1) identify issues of inaccessible research findings; (2) determine the need for a repository for research summaries; (3) co-create guidelines for authors and (4) agree a process for reviewing research summaries to be housed on the Movement Matters website. The new co-produced research repository, author guidelines and process were launched at the DCD-UK conference in Manchester 2023 and subsequently shared on social media and through the DCD research email list. The creation of the DCD-RAG and the process that we undertook together to create a non-academic repository for DCD research summaries are described. It is hoped that this repository will enable the wider public, community members and professionals to be able to readily benefit from accessible research, increasing a deeper and broader understanding of the evidence in the field.

Developmental Coordination Disorder (DCD) is also known as dyspraxia. DCD can affect a person's coordination, how they move and how they perform daily activities. It can impact quality of life and social and emotional wellbeing.Awareness of DCD is poor, so the DCD-UK committee started a Research Advisory Group, called DCD-RAG which includes adults with DCD and parents of children with DCD, to help them make information from DCD researchers more accessible.The group helped to identify the problems with gaining access to DCD research and they helped to write guidelines for researchers. They helped develop a website called Movement Matters for DCD researchers to file accessible summaries of their work. The group looked at how they could review summaries to ensure good practice.It is hoped the new website will help make DCD research from both the UK and internationally easier for the public and professionals to find, read and understand.Public involvement in research can be tokenistic. It is important that researchers allocate time to share findings with the people whose lives are the focus of the research.This article outlines how co-production with the public can improve the accessibility of research findings. Doing this in a way which is meaningful and accessible should be the minimum that researchers aim for.

Development and evaluation of an anti-ageism advisory group with older adults and gerontological experts: a qualitative descriptive study.

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.

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.

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health.

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.

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.

Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives.

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.

Supporting National Immunization Technical Advisory Groups (NITAGs) in development of evidence-based vaccine recommendations and NITAG assessments - New tools and approaches.

Increasing opportunities for prevention of infectious diseases by new, effective vaccines and the expansion of global immunization programs across the life course highlight the importance and value of evidence-informed decision-making (EIDM) by National Immunization Technical Advisory Groups (NITAGs). The U.S. Centers for Disease Control and Prevention (CDC) and Task Force for Global Health (TFGH) have developed and made available new tools to support NITAGs in EIDM. These include a toolkit for conducting facilitated training of NITAGs, Secretariats, or work groups on the use of the Evidence to Recommendations (EtR) approach to advise Ministries of Health (MoH) on specific vaccine policies, and an eLearning module on the EtR approach for NITAG members, Secretariat and others. The CDC and TFGH have also supported final development and implementation of the NITAG Maturity Assessment Tool (NMAT) for assessing maturity of NITAG capabilities in seven functional domains. The EtR toolkit and eLearning have been widely promoted in collaboration with the World Health Organization (WHO) Headquarters and Regional Offices through workshops engaging over 30 countries to date, and the NMAT assessment tool used in most countries in 3 WHO regions (Americas, Eastern Mediterranean, African). Important lessons have been learned regarding planning and conducting trainings for multiple countries and additional ways to support countries in applying the EtR approach to complete vaccine recommendations. Priorities for future work include the need to evaluate the impact of EtR training and NMAT assessments, working with partners to expand and adapt these tools for wider use, synergizing with other approaches for NITAG strengthening, and developing the best approaches to empower NITAGs to use the EtR approach.

Working collaboratively with an online advisory group of people with learning disabilities in covid-times: carrier pigeons, cats and drones.

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.

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 research­as 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.