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.

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.

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.

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.

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.

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.

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.

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.

Fostering Animal Welfare and Advancing 3Rs Principles through the Establishment of a 3Rs Advisory Group.

Based on the current state of science, the use of animals remains essential in bringing safe and effective medicines to patients. Respect for laboratory animal welfare and the application of 3Rs principles (the replacement, reduction, and refinement of animal use in research) are a priority throughout the pharmaceutical industry. Given the rapid pace of development, technological progress, and the emergence of new-approach methodologies (NAMs) in the field of biomedical research, maintaining a leading position in scientific advancements with a focus on the principles of replace, reduce, and refine (3Rs) can be quite challenging. To effectively address these challenges and sustain a prominent position in the scientific community, organizations can derive significant advantages from establishing an internal 3Rs advisory group (3Rs AG). The primary objective of a 3Rs AG is to stay at the forefront of the knowledge of best practices related to the 3Rs principles in the industry. This group plays a crucial role in fostering innovation and facilitating the seamless integration and implementation of 3Rs principles into a company's policies and procedures. The thoughtful reduction in and replacement of animal studies and the refinement of study designs and practices, enabled by a 3Rs AG, can minimize animal use as well as guide resources and positively impact study and data quality. This article provides guidance on how to establish a successful and impactful 3Rs AG.

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.

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.

Canada's National Advisory Committee on immunization: Adaptations and challenges during the COVID-19 pandemic.

The COVID-19 pandemic has challenged traditional vaccine guidance infrastructure and frameworks, and added urgency and complexity to the operation of National Immunization Technical Advisory Groups (NITAGs). Canada's National Advisory Committee on Immunization (NACI) provides immunization guidance to the Public Health Agency of Canada (PHAC) who publicly shares expert and evidence-informed guidance with Canadian provinces and territories. Throughout the pandemic, NACI and PHAC implemented many adaptations to meet urgent needs for pandemic vaccine guidance. In this paper, we describe: structural adaptations in response to the accelerated pace and amount of work required to issue recommendations that were timed around product authorizations and dynamic epidemiology; technical adaptations in response to rapidly evolving evidence of variable quality which required close monitoring, and which promoted reliance on basic vaccine principles due to incomplete direct evidence; the need to provide nimble advice (e.g., off-label recommendations, preferential recommendations); communications adaptations (e.g. identify sustainable spokespeople for the committee, receive stakeholder feedback, and ensure urgent nuanced advice was communicated to a diverse audience); and research adaptations focussing on solutions to constrained supply (e.g. prioritisation, extended intervals, and heterologous schedules). The early pandemic vaccine experience has created a roadmap of lessons and adaptations that should be leveraged in future pandemic vaccine programs, and has highlighted the essential role of NITAGs to complement regulatory structures during pandemics to ensure timely, impactful, and evidence-informed public health vaccine guidance.

The role of National Immunization Technical Advisory Groups in advising COVID-19 immunization policy during the pandemic: lessons from the Federation of Bosnia and Herzegovina.

A National Immunization Technical Advisory Group (NITAG) is a multi-disciplinary body of experts that provides evidence-based recommendations on immunizations to policy-makers to assist them in making immunization policy and program decisions. NITAGs faced challenges in making evidence-based recommendations for COVID-19 vaccines during the COVID-19 pandemic due to the new vaccine products available in a short time period and limited available data on vaccine effectiveness and vaccine safety. The authors reviewed the process used by the NITAG in the Federation of Bosnia and Herzegovina, called the expert body, to develop COVID-19 vaccine recommendations. The article reviews the evidence that was considered by the expert body when developing 23 recommendations on COVID-19 vaccination and describes the challenges and successes faced by the body. The expert body recommendations led to the successful roll-out of COVID-19 vaccines and provided guidance for COVID-19 vaccination during the pandemic. The expert body plans to improve its work and procedures for developing routine immunization recommendations with the support of the WHO Regional Office for Europe.

Trusting relationships and learning together: A rapid review of Indigenous reference groups in Australian Indigenous health research.

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.

Including the child's voice in research from a longitudinal birth cohort: insights from the ROLO young person's advisory group.

BACKGROUND: Public and patient involvement (PPI) through Young Person's Advisory Groups (YPAG) enables children to provide guidance and insight into research activities. PPI is an important characteristic of research, however, to date, most collaboration has been with adults. Also, few YPAGs have been established within the Irish setting. The ROLO (Randomised cOntrol trial of a LOw glycaemic index diet in pregnancy to prevent macrosomia) YPAG was established in July 2020 to identify the research priorities of a group of healthy Irish children who are part of a longitudinal birth cohort. We aimed to describe this process and the key insights to date. METHODS: The ROLO study is a longitudinal birth cohort which has followed-up mother-child dyads at multiple timepoints over 10 years. Mothers actively involved in the study were contacted by the research team to invite their ROLO child and older sibling to participate in the YPAG. Meetings were conducted virtually between July 2020 and February 2022. Researchers encouraged free expression of views amongst the children regarding their research interests. Meetings were recorded, transcribed verbatim and analysed for themes based on the topics most frequently discussed and considered important to participants. RESULTS: In all, seven ROLO children and six older siblings attended four ROLO YPAG meetings. Participants were aged between nine to fifteen years old. Four key themes were identified; study children viewed their identity as part of a longitudinal birth cohort as positive and unique; study children considered the fitness test and body measurements as fun aspects related to their participation; all children considered the impact and use of social media as an important form of communication; and all participants expressed interest in attaining new health-related information and learning opportunities. Children suggested topics such as mental health, future viruses, organ transplants, cancer, and the effect of technology and chemicals on the body were important for future research. CONCLUSION: The ROLO YPAG offers promising scope for continued collaboration. The themes identified from the meetings contribute to a gap in the literature which will guide future research activities, particularly with children, in view of study design, relevance, and by communication strategies. Trial Details: ISRCTN54392969 registered at www.isrctn.com .

The ROLO pregnancy study took place in the National Maternity Hospital in Dublin Ireland. It started in 2007 and ended in 2011. The researchers recorded what women were eating. They also measured the weight of the baby at birth. Since then, ROLO mothers and their children were invited to come back to the study. Now the children of the study are 9­11 years of age.The researchers invited members of the ROLO study to speak with them. They wanted to know what research was important to them. They set up a group called the ROLO Family Advisory Committee in 2017. This group of parents and researchers meet once a year. The group thought it was important to include children as well. They made a new group called the ROLO Young Person's Advisory Group in 2020. The group has 7 ROLO children and 6 older siblings. The members are aged between 9 and 15-years-old. The children and researchers have met four times so far.The researchers found four key themes. Study children saw their identity as being part of a longitudinal birth cohort as positive and unique. Study children liked the fitness test and body measurements. All children thought that social media was an important form of communication. All children were interested in learning new information on how their bodies worked.Involving this group of children is important. It will make our research more relevant. Other researchers who want to involve children can learn from our experience.

Recruitment, Retention, and Future Direction for a Heart Health Education and Risk Reduction Intervention Led by Community Health Workers in an African American Majority City.

Heart disease is a leading cause of death for African Americans. A community-academic partnership cross-trained community health workers to engage African American adults in a 6-month heart health education and risk reduction intervention. We conducted a one-group feasibility study using a one group (pre-posttest) design. A total of 100 adults were recruited from 27 zip codes in an African American majority city through community-based organizations (46%), churches (36%), and home visits (12%). Ninety-six percent were African American; 55% were female, 39% were male, and 6% were transgender. Their mean age was 44.6 years (SD = 15.9). Ninety-two percent had health insurance. Seventy-six percent of participants averaged blood pressure (BP) readings > 130/80 mmHg. Eleven percent of participants had a 30% or higher probability of developing cardiovascular disease in the next 10 years. Six-month follow-up was completed with 96% of participants. There were statistically significant increases in knowledge and in perception of personal risk for heart disease. However, slightly more participants (n = 77, 80.2%) had BP > 130/80 mmHg. The Community Advisory Group recommended expanding the intervention to 12 months and incorporating telehealth with home BP monitoring. Limited intervention duration did not meet longer term objectives such as better control of high BP and sharing risk reduction planning with primary care providers.

Public health and expert failure.

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

COVID-19 vaccine policy development in a sample of 44 countries - Key findings from a December 2021 survey of National Immunization Technical Advisory Groups (NITAGs).

National Immunization Technical Advisory Committees (NITAGs) are tasked with the responsibility of guiding ministries of health and national immunization programmes in their policy development processes. Many NITAGs rely on evidence reviewed by the World Health Organization's (WHO) Strategic Group of Experts(SAGE) on immunization and aim to adapt WHO's recommendations to their respective contexts. This relationship took on exceptional importance since the onset of the COVID-19 pandemic, during which NITAGs have expressed a notable struggle to craft appropriate policies on population prioritization and vaccine utilization in the face of supply constraints and complex programmatic and delivery logistics. This online survey was conducted to assess the usefulness of the SAGE guidance documents for COVID-19 vaccine policies and to examine the persisting needs and challenges facing NITAGs. Results confirmed that SAGE recommendations concerning COVID-19 vaccines are easy to access, understand, and adapt. They have been found to be comprehensive and timely under the data and time constrained circumstances confronting SAGE. The Global NITAG Network (GNN) appears to be the most popular vehicle for addressing questions among high income countries, in contrast to lower income countries who favour WHO Country or Regional Offices. NITAGs place much value on interaction with other NITAGs, which requires facilitation and could benefit from increased opportunities, especially within regions. It is further noted that some NITAGs have had to tackle issues during the pandemic not typically considered by SAGE, such as supply chain logistics and vaccine demand. Learning from the COVID-19 experience offers opportunities to strengthen NITAGs and the pandemic recovery effort through the development of more concrete procedures and consideration of more varied types of data, including implementation effectiveness and uptake data. There is also an opportunity for an increasing involvement of Country Office WHO personnel to support NITAGs, while ensuring information and evidence needs of countries are adequately reflected in SAGE deliberations.