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60 result(s) for "Online advisory groups"
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Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study
Health research increasingly incorporates public and patient involvement (PPI) to enhance trial inclusivity and relevance, and it is often mandated by funding and regulatory bodies. PPI boosts public engagement with trials and aligns trial objectives more closely with the priorities of the groups they aim to benefit. The Kid’s Trial, an online randomised trial co-created with children, aims to help them better understand what randomised trials are, why they matter, and improve their critical thinking skills. To ensure inclusivity and relevance, we established two PPI groups: the Children’s Research Advisory Group (CRAG) and the Parents’ Research Advisory Group (PRAG). We recruited a representative sample of children and parents from diverse ethnic, geographic, and socioeconomic backgrounds to reflect the trial’s target demographic. We engaged PPI group members through social media and email campaigns aimed at parents of children aged 7 to 12. PPI meetings were conducted online, followed set agendas, and included real-time trial updates, post-meeting feedback surveys, and polls. A PPI compensation plan was established in advance. Online interviews later captured their insights and experiences as PPI partners. Seven family units, comprised of eight children and seven parents, were recruited over 15 weeks from six countries. PPI partners shaped the trial design by contributing to website animations, aesthetic changes, and language adaptations. Interviews were analysed using reflexive thematic analysis to explore the facilitators, challenges, and outcomes of participating in our online research advisory groups. Reflections from researchers and PPI partners demonstrated that participation in the advisory groups enhanced children’s learning and confidence. Many members, including children and adults, experienced unexpected positive outcomes, such as increased scientific literacy, science communication and confidence. Their involvement meaningfully shaped the trial’s development and processes. This study also provides guidance for researchers engaging similar demographics in future PPI activities. Plain English summary Health research now often includes input from the public and patients (Patient and Public Involvement or PPI) to make studies more inclusive and useful. Many funding and regulatory organisations require this. When the public is involved, research studies become more relevant to the people they aim to help. The Kid’s Trial is an online study designed with children to teach them how health research works and help them think critically about health information they encounter. To make sure The Kid’s Trial was inclusive and meaningful, we created two PPI groups made up of children and their parents to help us design it. We used social media and email to recruit a diverse group of children and parents from different backgrounds. These groups met online to discuss the trial, make improvements, and give feedback. They worked on the website, website animations, trial design, and the language we used. The PPI group members were compensated for their time. Seven family units, consisting of eight children and seven parents from six countries, joined the PPI groups. We interviewed group members to understand what worked well, what was challenging, and what they gained from participating in the PPI groups. Children felt that their confidence and learning had improved. Many PPI group members experienced unexpected benefits. Their input significantly influenced the design of The Kid’s Trial. This study also offers valuable advice for researchers seeking to include children and parents as PPI partners in future studies.
How do national immunization technical advisory groups assess and use evidence: Findings from the SYSVAC survey
National immunization technical advisory groups (NITAGs) develop evidence-based vaccination recommendations. Systematic reviews (SRs) are important tools in that process, but conducting them is very resource-intensive. Given the considerable number of immunization-related SRs published and to minimize duplication of effort, a more practical approach for NITAGs is to use existing SRs. Among multiple initiatives and resources to strengthen NITAGs, the freely accessible SYSVAC registry supports NITAGs in identifying suitable SRs when developing vaccination recommendations. Additional SYSVAC courses provide step-by-step training on how to use SRs. This cross-sectional survey was conducted online and involved 108 participants globally. The aim was to explore NITAGs user experience with evidence retrieval, to assess impact and use of the SYSVAC resources and training needs. Data were collected using a structured questionnaire. Most of the respondents were > 45 years old (75.9%) and represented 50 NITAGs from all six World Health Organization (WHO) regions. In total, 13/50 NITAGs (26.0%) had ease accessing full text publications. The preferred data sources to search for evidence were peer reviewed literature via PubMed and the WHO website (Strategic Advisory Group of Experts – SAGE – on Immunization). When developing vaccination recommendations, respondents stated using SRs mostly conducted by SAGE, other institutions or NITAGs (83.2%), recommendations of other countries (79.4%) and primary studies (73.8%). Respondents from 35 NITAGs stated to use the SYSVAC registry to search for evidence, leading to ≥69 recommendations being developed by NITAGs globally with its support. Aside existing SYSVAC courses on SR use, there was great interest in training on SR use in the development of vaccination recommendations. Our survey gathered information on evidence use and training needs. Survey results serve as a starting point to improve support of NITAGs in developing recommendations. •Only a quarter of NITAGs have easy access to full text of publications found online.•Most NITAGs use systematic reviews and recommendations of other countries.•Only a limited number of NITAGs conduct or commission systematic reviews themselves.•NITAGs use SYSVAC; numerous recommendations were developed with SYSVAC registry.•High interest in training on systematic review use.
COVID-19: Retransmission of official communications in an emerging pandemic
As the most visible face of health expertise to the general public, health agencies have played a central role in alerting the public to the emerging COVID-19 threat, providing guidance for protective action, motivating compliance with health directives, and combating misinformation. Social media platforms such as Twitter have been a critical tool in this process, providing a communication channel that allows both rapid dissemination of messages to the public at large and individual-level engagement. Message dissemination and amplification is a necessary precursor to reaching audiences, both online and off, as well as inspiring action. Therefore, it is valuable for organizational risk communication to identify strategies and practices that may lead to increased message passing among online users. In this research, we examine message features shown in prior disasters to increase or decrease message retransmission under imminent threat conditions to develop models of official risk communicators' messages shared online from February 1, 2020-April 30, 2020. We develop a lexicon of keywords associated with risk communication about the pandemic response, then use automated coding to identify message content and message structural features. We conduct chi-square analyses and negative binomial regression modeling to identify the strategies used by official risk communicators that respectively increase and decrease message retransmission. Findings show systematic changes in message strategies over time and identify key features that affect message passing, both positively and negatively. These results have the potential to aid in message design strategies as the pandemic continues, or in similar future events.
Assessment of US Preventive Services Task Force Guideline–Concordant Cervical Cancer Screening Rates and Reasons for Underscreening by Age, Race and Ethnicity, Sexual Orientation, Rurality, and Insurance, 2005 to 2019
Cervical cancer screening rates are suboptimal in the US. Population-based assessment of reasons for not receiving screening is needed, particularly among women from historically underserved demographic groups. To estimate changes in US Preventive Service Task Force guideline-concordant cervical cancer screening over time and assess the reasons women do not receive up-to-date screening by sociodemographic factors. This pooled population-based cross-sectional study used data from the US National Health Interview Survey from 2005 and 2019. A total of 20 557 women (weighted, 113.1 million women) aged 21 to 65 years without previous hysterectomy were included. Analyses were conducted from March 30 to August 19, 2021. Sociodemographic factors, including age, race and ethnicity, sexual orientation, rurality of residence, and health insurance type. Primary outcomes were US Preventive Services Task Force guideline-concordant cervical cancer screening rates and self-reported primary reasons for not receiving up-to-date screening. For 2005, up-to-date screening was defined as screening every 3 years for women aged 21 to 65 years. For 2019, up-to-date screening was defined as screening every 3 years with a Papanicolaou test alone for women aged 21 to 29 years and screening every 3 years with a Papanicolaou test alone or every 5 years with high-risk human papillomavirus testing or cotesting for women aged 30 to 65 years. Population estimation included sampling weights. Among 20 557 women (weighted, 113.1 million women) included in the study, most were aged 30 to 65 years (16 219 women; weighted, 86.3 million women [76.3%]) and had private insurance (13 571 women; weighted, 75.8 million women [67.0%]). With regard to race and ethnicity, 997 women (weighted, 6.9 million women [6.1%]) were Asian, 3821 women (weighted, 19.5 million women [17.2%]) were Hispanic, 2862 women (weighted, 14.8 million women [13.1%]) were non-Hispanic Black, 12 423 women (weighted, 69.0 million women [61.0%]) were non-Hispanic White, and 453 women (weighted, 3.0 million women [2.7%]) were of other races and/or ethnicities (including Alaska Native and American Indian [weighted, 955 000 women (0.8%)] and other single and multiple races or ethnicities [weighted, 2.0 million women (1.8%)]). In 2019, women aged 21 to 29 years had a significantly higher rate of overdue screening (29.1%) vs women aged 30 to 65 years (21.1%; P < .001). In both age groups, the proportion of women without up-to-date screening increased significantly from 2005 to 2019 (from 14.4% to 23.0%; P < .001). Significantly higher rates of overdue screening were found among those of Asian vs non-Hispanic White race and ethnicity (31.4% vs 20.1%; P = .01), those identifying as LGBQ+ (gender identity was not assessed because of a small sample) vs heterosexual (32.0% vs 22.2%; P < .001), those living in rural vs urban areas (26.2% vs 22.6%; P = .04), and those without insurance vs those with private insurance (41.7% vs 18.1%; P < .001). The most common reason for not receiving timely screening across all groups was lack of knowledge, ranging from 47.2% of women identifying as LGBQ+ to 64.4% of women with Hispanic ethnicity. Previous receipt of a human papillomavirus vaccine was not a primary reason for not having up-to-date screening (<1% of responses). From 2005 to 2019, among women aged 30 to 65 years, lack of access decreased significantly as a primary reason for not receiving screening (from 21.8% to 9.7%), whereas lack of knowledge (from 45.2% to 54.8%) and not receiving recommendations from health care professionals (from 5.9% to 12.0%) increased significantly. This cross-sectional study found that cervical cancer screening that was concordant with US Preventive Services Task Force guidelines decreased in the US between 2005 and 2019, with lack of knowledge reported as the biggest barrier to receiving timely screening. Campaigns addressing patient knowledge and provider communication may help to improve screening rates, and cultural adaptation of interventions is needed to reduce existing disparities.
Evaluation of Revised US Preventive Services Task Force Lung Cancer Screening Guideline Among Women and Racial/Ethnic Minority Populations
Lung cancer incidence and mortality disproportionately affect women and racial/ethnic minority populations, yet screening guidelines for the past several years were derived from clinical trials of predominantly White men. To reflect current evidence, the US Preventive Services Task Force (USPSTF) has revised the eligibility criteria, which may help to ameliorate sex- and race/ethnicity-related disparities in lung cancer screening. To determine the changes associated with the revised USPSTF guideline for lung cancer screening eligibility among female, Black, and Hispanic populations using a large nationwide survey. This cross-sectional study included respondents to the Centers for Disease Control and Prevention's Behavioral Risk Factor Surveillance System who were 50 to 80 years of age with a smoking history in 19 states that used the optional lung cancer screening module. The change in eligibility among female, male, Black, Hispanic, and White participants was examined. Eligibility by sex and race/ethnicity was compared with a reference population. Data were collected from January 1, 2017, to December 31, 2018, and analyzed from May 8 to June 11, 2020. Self-reported sex, race/ethnicity, age, and smoking history. Lung cancer screening eligibility using the revised USPSTF criteria. The previous criteria included current or past smokers (within 15 years) who were 55 to 80 years of age and had a smoking history of more than 30 pack-years. In the revised criteria, age was modified to 50 to 80 years; smoking history, to 20 pack-years. Among 40 869 respondents aged 50 to 80 years with a smoking history, 21 265 (52.0%) were women, 3430 (8.4%) were Black, and 1226 (30.0%) were Hispanic (mean [SD] age, 65.6 [7.9] years). The revised criteria increased eligibility for the following populations: men (29.4% to 38.3% [8.9% difference]; P < .001), women (25.9% to 36.4% [10.5% difference]; P < .001), White individuals (31.1% to 40.9% [9.8% difference]; P < .001), Black individuals (16.3% to 28.8% [12.5% difference]; P < .001), and Hispanic individuals (10.5% to 18.7% [8.2% difference]; P < .001). The odds of eligibility were lower for women compared with men (adjusted odds ratio [AOR], 0.88; 95% CI, 0.79-0.99; P = .04) and for Black (AOR, 0.43; 95% CI, 0.33-0.56; P < .001) and Hispanic populations (AOR, 0.70; 95% CI, 0.62-0.80; P < .001) compared with the White population. The revised USPSTF guideline may likely increase lung cancer screening rates for female, Black, and Hispanic populations. However, despite these potential improvements, lung cancer screening inequities may persist without tailored eligibility criteria.
Lower carbohydrate diets for adults with type 2 diabetes
In May 2021, the Scientific Advisory Committee on Nutrition (SACN) published a risk assessment on lower carbohydrate diets for adults with type 2 diabetes (T2D)(1). The purpose of the report was to review the evidence on ‘low’-carbohydrate diets compared with the current UK government advice on carbohydrate intake for adults with T2D. However, since there is no agreed and widely utilised definition of a ‘low’-carbohydrate diet, comparisons in the report were between lower and higher carbohydrate diets. SACN’s remit is to assess the risks and benefits of nutrients, dietary patterns, food or food components for health by evaluating scientific evidence and to make dietary recommendations for the UK based on its assessment(2). SACN has a public health focus and only considers evidence in healthy populations unless specifically requested to do otherwise. Since the Committee does not usually make recommendations relating to clinical conditions, a joint working group (WG) was established in 2017 to consider this issue. The WG comprised members of SACN and members nominated by Diabetes UK, the British Dietetic Association, Royal College of Physicians and Royal College of General Practitioners. Representatives from NHS England and NHS Health Improvement, the National Institute for Health and Care Excellence and devolved health departments were also invited to observe the WG. The WG was jointly chaired by SACN and Diabetes UK.
Research Into Digital Health Intervention for Mental Health: 25-Year Retrospective on the Ethical and Legal Challenges
Digital mental health interventions are routinely integrated into mental health services internationally and can contribute to reducing the global mental health treatment gap identified by the World Health Organization. Research teams designing and delivering evaluations frequently invest substantial effort in deliberating on ethical and legal challenges around digital mental health interventions. In this article, we reflect on our own research experience with digital mental health intervention design and evaluation to identify 8 of the most critical challenges that we or others have faced, and that have ethical or legal consequences. These include: (1) harm caused by online recruitment work; (2) monitoring of intervention safety; (3) exclusion of specific demographic or clinical groups; (4) inadequate robustness of effectiveness and cost-effectiveness findings; (5) adequately conceptualizing and supporting engagement and adherence; (6) structural barriers to implementation; (7) data protection and intellectual property; and (8) regulatory ambiguity relating to digital mental health interventions that are medical devices. As we describe these challenges, we have highlighted serious consequences that can or have occurred, such as substantial delays to studies if regulations around Software as a Medical Device (SaMD) are not fully understood, or if regulations change substantially during the study lifecycle. Collectively, the challenges we have identified highlight a substantial body of required knowledge and expertise, either within the team or through access to external experts. Ensuring access to knowledge requires careful planning and adequate financial resources (for example, paying public contributors to engage in debate on critical ethical issues or paying for legal opinions on regulatory issues). Access to such resources can be planned for on a per-study basis and enabled through funding proposals. However, organizations regularly engaged in the development and evaluation of digital mental health interventions should consider creating or supporting structures such as advisory groups that can retain necessary competencies, such as in medical device regulation.
Google Trends for the Human Papillomavirus Vaccine in India From 2010 to 2024: Infodemiological Study
Human papillomavirus (HPV) is a leading cause of cervical cancer. It has a substantial impact on global public health, with low- and middle-income countries, including India, facing the highest burden. In 2022, India reported 127,526 new cases and 79,906 deaths due to cervical cancer, projected to increase by 61% by 2040. Although the National Technical Advisory Group on Immunization recommended the HPV vaccine for cervical cancer prevention, it is yet to be a part of India's universal immunization program. This study aims to examine online interest in the HPV vaccine in India from January 2010 to April 2024 using Google Trends. A cross-sectional analysis of Google Trends data was performed, using the relative search volume to track interest on a scale of 0-100. Trends were analyzed annually using 1-way ANOVA and joinpoint regression to identify significant changes in search behavior related to public health events. Statistical significance was set at P<.05. The average annual growth in HPV vaccine-related searches was 13.7% (95% CI 7.9%-19.1%), with the highest relative search volume in 2024 (49.5) and the lowest in 2017 (3.38). Spikes in search interest aligned with key events like the 2018 National Technical Advisory Group on Immunization recommendation and the 2022 launch of the indigenous HPV vaccine. The results highlight online search data's value in tracking public interest, which fluctuates in response to health policy changes or developments on social media. In India, targeted digital strategies will be vital for addressing vaccine hesitancy and increasing HPV vaccine uptake. Google Trends data can inform public health strategies by identifying periods of high interest, aiding in the promotion of HPV vaccination in India.
Strategies to adapt and implement health system guidelines and recommendations: a scoping review
Background Evidence-based health system guidelines are pivotal tools to help outline the important financial, policy and service components recommended to achieve a sustainable and resilient health system. However, not all guidelines are readily translatable into practice and/or policy without effective and tailored implementation and adaptation techniques. This scoping review mapped the evidence related to the adaptation and implementation of health system guidelines in low- and middle-income countries. Methods We conducted a scoping review following the Joanna Briggs Institute methodology for scoping reviews. A search strategy was implemented in MEDLINE (Ovid), Embase, CINAHL, LILACS (VHL Regional Portal), and Web of Science databases in late August 2020. We also searched sources of grey literature and reference lists of potentially relevant reviews. All findings were reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Results A total of 41 studies were included in the final set of papers. Common strategies were identified for adapting and implementing health system guidelines, related barriers and enablers, and indicators of success. The most common types of implementation strategies included education, clinical supervision, training and the formation of advisory groups. A paucity of reported information was also identified related to adaptation initiatives. Barriers to and enablers of implementation and adaptation were reported across studies, including the need for financial sustainability. Common approaches to evaluation were identified and included outcomes of interest at both the patient and health system level. Conclusions The findings from this review suggest several themes in the literature and identify a need for future research to strengthen the evidence base for improving the implementation and adaptation of health system guidelines in low- and middle-income countries. The findings can serve as a future resource for researchers seeking to evaluate implementation and adaptation of health system guidelines. Our findings also suggest that more effort may be required across research, policy and practice sectors to support the adaptation and implementation of health system guidelines to local contexts and health system arrangements in low- and middle-income countries.
Citizen science to improve patient and public involvement in GUideline Implementation in oral health and DEntistry (the GUIDE platform)
Background Citizen science is a way to democratise science by involving groups of citizens in the research process. Clinical guidelines are used to improve practice, but their implementation can be limited. Involving patients and the public can enhance guideline implementation, but there is uncertainty about the best approaches to achieve this. Citizen science is a potential way to involve patients and the public in improving clinical guideline implementation. We aimed to explore the application of citizen science methods to involve patients and the public in the dissemination and implementation of clinical guidelines in oral health and dentistry. Methods We developed GUIDE (GUideline Implementation in oral health and DEntistry), a citizen science online platform, using a participatory approach with researchers, oral health professionals, guideline developers and citizens. Recruitment was conducted exclusively online. The platform focused on prespecified challenges related to oral health assessment guidelines, and asked citizens to generate ideas, as well as vote and comment on other citizens' ideas to improve those challenges. Citizens also shared their views via surveys and two online synchronous group meetings. Data were collected on participant's demographics, platform engagement and experience of taking part. The most promising idea category was identified by an advisory group based on engagement, feasibility and relevance. We presented quantitative data using descriptive statistics and analysed qualitative data using inductive and deductive thematic analysis. Results The platform was open for 6 months and we recruited 189 citizens, from which over 90 citizens actively engaged with the platform. Most citizens were over 34 years (64%), female (58%) and had a university degree (50%). They generated 128 ideas, 146 comments and 248 votes. The challenge that led to most engagement was related to prevention and oral health self‐care. To take this challenge forward, citizens generated a further 36 ideas to improve a pre‐existing National Health Service oral care prevention leaflet. Citizens discussed motivations to take part in the platform (understanding, values, self‐care), reasons to stay engaged (communication and feedback, outputs and impact, and relevance of topics discussed) and suggestions to improve future platforms. Conclusion Citizen science is an effective approach to generate and prioritise ideas from a group of citizens to improve oral health and dental services. Prevention and oral health self‐care were of particular interest to citizens. More research is needed to ensure recruitment of a diverse group of citizens and to improve retention in citizen science projects. Patient or Public Contribution This project was inherently conducted with the input of public partners (citizen scientists) in all key aspects of its conduct and interpretation. In addition, two public partners were part of the research team and contributed to the design of the project, as well as key decisions related to its conduct, analysis, interpretation and dissemination and are co‐authors of this manuscript.