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For more than half a century, Denmark has maintained population-wide demographic, health care, and socioeconomic registers that provide detailed information on the interaction between all residents and the extensive national social services system. We leverage this resource to reconstruct the genealogy of the entire nation based on all individuals legally residing in Denmark since 1968. We cross-reference 6,691,426 individuals with nationwide health care registers to estimate heritability and genetic correlations of 10 broad diagnostic categories involving all major organs and systems. Heritability estimates for mental disorders were consistently the highest across demographic cohorts (average h2 = 0.406, 95% CI = [0.403, 0.408]), whereas estimates for cancers were the lowest (average h2 = 0.130, 95% CI = [0.125, 0.134]). The average genetic correlation of each of the 10 diagnostic categories with the other nine was highest for gastrointestinal conditions (average rg = 0.567, 95% CI = [0.566, 0.567]) and lowest for urogenital conditions (average rg = 0.386, 95% CI = [0.385, 0.388]). Mental, pulmonary, gastrointestinal, and neurological conditions had similar genetic correlation profiles.
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Enfermedades Genéticas Congénitas/diagnóstico , Enfermedades Genéticas Congénitas/genética , Predisposición Genética a la Enfermedad/genética , Dinamarca , Investigación sobre Servicios de Salud/métodos , Humanos , Trastornos Mentales/diagnóstico , Trastornos Mentales/genéticaRESUMEN
PURPOSE OF REVIEW: Community engagement is key to the success of sustainable public health interventions. This review highlights recent published studies that describe the use of community-engaged methods in sexually transmitted infection (STI) prevention research. RECENT FINDINGS: We organized the findings using a socio-ecological model. At the individual level, communities were engaged through participation in formative research, short-term consultations and community advisory board participation, as well as co-creation activities. At the interpersonal level, studies reviewed described peer-led interventions that leverage the influence and guidance of peers, patient-led interventions in the form of patient navigation and notification, as well as those that mobilize social networks and the power of social relationships to promote health. At the organizational and community level, multisectoral, multifacility collaborations between community, government, and academic stakeholders were highlighted. At the policy and population level, communities were engaged through community dialogues to disseminate research findings, as well as in developing strategic frameworks and clinical guidelines. Digital tools have also been leveraged for effective community engagement. SUMMARY: Communities have an effective role to play in STI prevention and can be engaged at multiple levels. Future efforts may consider the use of community engagement tools highlighted in this review, including digital technologies that have the potential to reach more diverse end-users.
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Infecciones por VIH , Enfermedades de Transmisión Sexual , Humanos , Enfermedades de Transmisión Sexual/prevención & control , Enfermedades de Transmisión Sexual/epidemiología , Infecciones por VIH/prevención & control , Infecciones por VIH/epidemiología , Promoción de la Salud , Salud Pública , Investigación sobre Servicios de SaludRESUMEN
We present a detailed argument for how to integrate, or bridge, systems science thinking and methods with implementation science. We start by showing how fundamental systems science principles of structure, dynamics, information, and utility are relevant for implementation science. Then we examine the need for implementation science to develop and apply richer theories of complex systems. This can be accomplished by emphasizing a causal mechanisms approach. Identifying causal mechanisms focuses on the "cogs and gears" of public health, clinical, and organizational interventions. A mechanisms approach focuses on how a specific strategy will produce the implementation outcome. We show how connecting systems science to implementation science opens new opportunities for examining and addressing social determinants of health and conducting equitable and ethical implementation research. Finally, we present case studies illustrating successful applications of systems science within implementation science in community health policy, tobacco control, health care access, and breast cancer screening.
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Ciencia de la Implementación , Humanos , Política de Salud , Análisis de Sistemas , Determinantes Sociales de la Salud , Teoría de Sistemas , Accesibilidad a los Servicios de Salud/organización & administración , Investigación sobre Servicios de Salud/organización & administración , Salud Pública , Neoplasias de la MamaRESUMEN
BACKGROUND: The first evaluation of radiotherapy results in patients with breast cancer treated as part of a multimodal oncologic therapy in the Nahe Breast Center is presented. Analysis of the results was performed using an in-practice registry. PATIENTS AND METHODS: From September 2016 to December 2017, 138 patients (median age 62.5 years; range 36-94 years) with breast cancer (right side, nâ¯= 67; left side, nâ¯= 71) received adjuvant radiation therapy. Of these, 103 patients received gyneco-oncologic care at the Nahe Breast Center, and 35 were referred from outside breast centers. The distribution into stages was as follows: stage I, nâ¯= 48; stage II, nâ¯= 68; stage III, nâ¯= 19; stage IV, nâ¯= 3. Neoadjuvant chemotherapy was given to 19 and adjuvant chemotherapy to 50 patients. Endocrine treatment was given to 120 patients. Both 3D conformal (nâ¯= 103) and intensity-modulated (nâ¯= 35) radiotherapy were performed with a modern linear accelerator. RESULTS: With a median follow-up of 60 months (1-67), local recurrence occurred in 4/138 (2.9%) and distant metastasis in 8/138 (5.8%) patients; 7/138 (5.1%) patients died of their tumors during the follow-up period. The actuarial 5year local recurrence-free survival of all patients was 97.1%, and the actuarial 5year overall survival of all patients was 94.9%. We observed no grade 3 or 4 radiogenic side effects. CONCLUSION: The results of radiotherapy for breast carcinoma at the Nahe Breast Center are comparable to published national and international results. In particular, the local recurrence rates in our study, determined absolutely and actuarially, are excellent, and demonstrate the usefulness of radiotherapy.
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Neoplasias de la Mama , Humanos , Persona de Mediana Edad , Femenino , Neoplasias de la Mama/patología , Estadificación de Neoplasias , Estudios de Seguimiento , Mama/patología , Investigación sobre Servicios de Salud , Recurrencia Local de Neoplasia/patologíaRESUMEN
The term qualitative research refers to a family of primarily non-numeric methods for describing, analyzing, and interpreting the lived experiences of people in their day to day lives. Originally developed to study social problems such as poverty, juvenile delinquency, and race relations, qualitative research methods have been used in the health sciences since the 1960s to better understand the socialization of medical professionals and the culture of medical education and practice. More recently, qualitative research has been employed in health services research to address and improve the quality and safety of care. While quantitative researchers generally ask "what" or "how many" questions, qualitative researchers generally ask, "why" or "how"? Publishing qualitative research comes with a number of challenges, among them, manuscript length, unfamiliarity of reviewers with qualitative traditions, and sample sizes that, by design, are difficult to generalize from. In addition, while there is general agreement about the quality of evidence and types of research designs used in quantitative studies, the same is not yet the case for qualitative and mixed methods research although a variety of useful guidelines have recently appeared. From the perspective of journal editors, we raise and offer guidance on three important questions: (1) Is the study under review suitable for this journal? (2) What is the rationale for using qualitative methods to carry out the research? (3) What are editors/reviewers looking for in a qualitative submission? In unpacking the third question, we describe common strategies editors use and challenges that we have encountered in the abstract, background, methods, results, discussion, and conclusions sections of qualitative submissions we and our colleagues have reviewed.
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Investigación sobre Servicios de Salud , Edición , Humanos , Investigación CualitativaRESUMEN
The rapid expansion of virtual care is driving demand for equitable, high-quality access to technologies that are required to utilize these services. While the Department of Veterans Affairs (VA) is seen as a national leader in the implementation of telehealth, there remain gaps in evidence about the most promising strategies to expand access to virtual care. To address these gaps, in 2022, the VA's Health Services Research and Development service and Office of Connected Care held a "state-of-the-art" (SOTA) conference to develop research priorities for advancing the science, clinical practice, and implementation of virtual care. One workgroup within the SOTA focused on access to virtual care and addressed three questions: (1) Based on the existing evidence about barriers that impede virtual care access in digitally vulnerable populations, what additional research is needed to understand these factors? (2) Based on the existing evidence about digital inclusion strategies, what additional research is needed to identify the most promising strategies? and (3) What additional research beyond barriers and strategies is needed to address disparities in virtual care access? Here, we report on the workgroup's discussions and recommendations for future research to improve and optimize access to virtual care. Effective implementation of these recommendations will require collaboration among VA operational leadership, researchers, Human Factors Engineering experts and front-line clinicians as they develop, implement, and evaluate the spread of virtual care access strategies.
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Telemedicina , Veteranos , Estados Unidos , Humanos , United States Department of Veterans Affairs , Atención a la Salud , Investigación sobre Servicios de Salud , Salud de los VeteranosRESUMEN
Policy Points The health care sector is increasingly investing in social conditions, including availability of safe, reliable, and adequate transportation, that contribute to improving health. In this paper, we suggest ways to advance the impact of transportation interventions and highlight the limitations of how health services researchers and practitioners currently conceptualize and use transportation. Incorporating a transportation justice framework offers an opportunity to address transportation and mobility needs more comprehensively and equitably within health care research, delivery, and policy.
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Justicia Social , Transportes , Investigación sobre Servicios de Salud , HumanosRESUMEN
PURPOSE: This study marks the 50th anniversary of NAPCRG (formerly the North American Primary Care Research Group) by examining social connections among members. METHODS: This descriptive social network analysis was conducted via the Program to Analyze, Record, and Track Networks to Enhance Relationships (PARTNER) survey tool. RESULTS: Responses from 906 participants resulted in 1,721 individuals with 5,196 partner relationships. Most relationships (60%) were characterized as having an integrated level of collaboration. Many relationships led to a research paper (58%) or a grant (34%). CONCLUSIONS: This social network analysis of NAPCRG members' relationships described over 5,000 relationships, many producing publications, grants, and perceived advancements in primary care.
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Atención Primaria de Salud , Humanos , Apoyo Social , Red Social , Masculino , Femenino , Conducta Cooperativa , Análisis de Redes Sociales , Investigación sobre Servicios de Salud , Encuestas y CuestionariosRESUMEN
PURPOSE: The COVID-19 pandemic disrupted pediatric health care in the United States, and this disruption layered on existing barriers to health care. We sought to characterize disparities in unmet pediatric health care needs during this period. METHODS: We analyzed data from Wave 1 (October through November 2020) and Wave 2 (March through May 2021) of the COVID Experiences Survey, a national longitudinal survey delivered online or via telephone to parents of children aged 5 through 12 years using a probability-based sample representative of the US household population. We examined 3 indicators of unmet pediatric health care needs as outcomes: forgone care and forgone well-child visits during fall 2020 through spring 2021, and no well-child visit in the past year as of spring 2021. Multivariate models examined relationships of child-, parent-, household-, and county-level characteristics with these indicators, adjusting for child's age, sex, and race/ethnicity. RESULTS: On the basis of parent report, 16.3% of children aged 5 through 12 years had forgone care, 10.9% had forgone well-child visits, and 30.1% had no well-child visit in the past year. Adjusted analyses identified disparities in indicators of pediatric health care access by characteristics at the level of the child (eg, race/ethnicity, existing health conditions, mode of school instruction), parent (eg, childcare challenges), household (eg, income), and county (eg, urban-rural classification, availability of primary care physicians). Both child and parent experiences of racism were also associated with specific indicators of unmet health care needs. CONCLUSIONS: Our findings highlight the need for continued research examining unmet health care needs and for continued efforts to optimize the clinical experience to be culturally inclusive.
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COVID-19 , Pandemias , Niño , Humanos , Estados Unidos/epidemiología , COVID-19/epidemiología , Etnicidad , Accesibilidad a los Servicios de Salud , Investigación sobre Servicios de SaludRESUMEN
BACKGROUND: The story completion method provides a different way of doing qualitative research. We note the emergent popularity of this method in health-related research, while much remains to be negotiated in terms of best practices for such studies. This scoping review aims to provide a synthesis on how researchers have used the story completion method in health services research. We offer implications for research and practice for further discussion by the scholarly community. METHODS: We used the JBI methodology for scoping reviews. Six databases were searched for published literature till March 1, 2023: Medline, Embase, CINAHL, PsycINFO, SAGE Journals Online databases, and SAGE Research Methods. We included primary studies of any study design using the story completion method in health services research. RESULTS: A total of 17 studies were included. Findings suggest that the story completion method is useful for research on sensitive topics, and affords the use of comparative study designs and large sample sizes which may be difficult with conventional qualitative research methods. More than 80% of included studies used story completion as the sole method. However, the data collected from this method were limited in terms of the inferences that can be drawn; and richness of participant responses may vary widely. Less than 30% of included studies reported piloting of the story stems. Most studies were conducted online and analyzed qualitatively, though the story stem design and sample size varied widely. CONCLUSION: The story completion method, with its attendant affordances for larger sample sizes, comparative study designs, and streamlined data collection is an innovative and useful stand-alone or adjunct qualitative method for health services research.
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Investigación sobre Servicios de Salud , Investigación Cualitativa , Proyectos de Investigación , Humanos , Investigación sobre Servicios de Salud/estadística & datos numéricos , NarraciónRESUMEN
BACKGROUND: Responsiveness to the population's non-clinical needs encompasses various dimensions, including responsive research and an educational outreach plan at the community level. This study aims to develop a community-responsive research model in the healthcare system to ensure the connection between community-identified health priorities and research funds, as well as capacity-building efforts. METHODS: A mixed-methods research study was conducted in three main phases, including a comprehensive literature review, a qualitative analysis of an expert panel's points of view, and the developing of a model using the Equation Modeling (SEM) technique. R software version 3.2.4 was used to conduct statistical analysis, considering a significance level of 0.05. RESULTS: Based on the literature review, 41 responsiveness components were identified from sixteen relevant studies conducted between 2000 and 2022. Ten sub-themes in four major themes, including planning, implementation, monitoring and evaluation, and action, were identified through qualitative content analysis. Standardized coefficients revealed that components such as dissemination of results to all stakeholders, research prioritization aligned with community needs, commitment to implement research findings, and collaborative learning had statistically significant effects on the community-responsive research model. CONCLUSION: It is essential to identify community health priorities by following a community-focused, priority-setting process based on the principles of community engagement to develop a community-responsive research model. Afterward, dissemination of research findings to all stakeholders, commitment to apply the obtained results in the real world, and promotion of shared learning among research partners have been proven to facilitate collaborative investigation and mutual understanding between the community and academic partners.
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Atención a la Salud , Humanos , Investigación sobre Servicios de Salud , Prioridades en Salud , Investigación Cualitativa , Creación de Capacidad/métodosRESUMEN
BACKGROUND: Successfully recruiting male participants to complete a healthcare related study is important for healthcare study completion and to advance our clinical knowledgebase. To date, most research studies have examined the barriers and facilitators of female participants in longitudinal healthcare-related studies with limited information available about the needs of males in longitudinal research. This systematic review examines the unique barriers and facilitators to male recruitment across longitudinal healthcare-related research studies. METHODS: Following PRIMSA guidelines, MEDLINE, Embase, CINAHL and Web of Science databases were systematically searched using the terms recruitment and/or retention, facilitators and/or barriers and longitudinal studies from 1900 to 2023 which contained separate data on males aged 17-59 years. Health studies or interventions were defined longitudinal if they were greater than or equal to 12 weeks in duration with 3 separate data collection visits. RESULTS: Twenty-four articles published from 1976-2023 met the criteria. One-third of the studies had a predominantly male sample and four studies recruited only male participants. Males appear disinterested towards participation in health research, however this lack of enthusiasm can be overcome by clear, non-directive communication, and studies that support the participants interests. Facilitating factors are diverse and may require substantial time from research teams. CONCLUSIONS: Future research should focus on the specific impact of these factors across the spectrum of longitudinal health-related studies. Based on the findings of this systematic review, researchers from longitudinal health-related clinical trials are encouraged to consider male-specific recruitment strategies to ensure successful recruitment and retention in their studies. REGISTRATION: This systemic review is registered with the PROSPERO database (CRD42021254696).
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Selección de Paciente , Humanos , Masculino , Estudios Longitudinales , Adulto , Adolescente , Persona de Mediana Edad , Adulto Joven , Investigación sobre Servicios de Salud/estadística & datos numéricosRESUMEN
BACKGROUND: Intervention fidelity in health services research has been poor with a reported lack of understanding about what constitutes pragmatic adaptation of interventions and what constitutes failure to maintain intervention fidelity. However, the challenges facing those delivering such interventions have not been thoroughly explored. The aims of this study were to critically explore the challenges in maintaining fidelity experienced by physiotherapy staff and support workers when delivering a complex intervention for older people living with frailty. METHODS: This study is a secondary analysis of data from a process evaluation of a large randomised controlled trial (RCT). The process evaluation employed qualitative methodologies with mixed methods including a variety of data collection methods, including participant observation, semi-structured interviews and documentary analysis. Thematic analysis was used to make sense of the data. RESULTS: Many therapy staff felt ongoing confusion about what was acceptable to adapt and what needed to follow the protocol exactly. We found that some therapy staff were able to embrace the challenges of pragmatically adapting interventions while maintaining intervention fidelity, others stuck rigidly to the protocol and failed to adapt interventions where it was necessary. CONCLUSION: It was clear that the understanding of fidelity and pragmatism was poor. While pragmatic trials are vital to replicate real world clinical practice, further guidance may need to be developed in order to guide the level of adaptation that is acceptable before fidelity is undermined.
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Ejercicio Físico , Humanos , Anciano , Ejercicio Físico/fisiología , Femenino , Masculino , Investigación Cualitativa , Fragilidad/terapia , Ensayos Clínicos Controlados Aleatorios como Asunto/métodos , Investigación sobre Servicios de Salud , Modalidades de Fisioterapia , Terapia por Ejercicio/métodosRESUMEN
BACKGROUND: Traditional research methods often involve a lengthy process, but the emergence of flash mobs as an innovative data collection method offers the potential to gather substantial data within a short time frame. Flash mobs draw inspiration from the concept of large groups organizing through the internet or mobile devices to perform a prearranged action in public. In healthcare research, flash mobs serve as research organizing method to investigate clinically relevant questions on a large scale within a limited period. AIMS: This study aims to present a study protocol for a scoping review that comprehensively maps the existing literature on the use of flash mobs as a data collection method in healthcare research. METHODS: The review will follow established guidelines and include steps such as identifying the research question, identifying relevant studies, selecting studies, charting the data, and collating and summarizing the results. The review will utilize databases, manual screening of additional sources, and covidence for study selection and data charting. The findings will be summarized using descriptive statistics and a descriptive synthesis of qualitative data. The review protocol has been registered with the Open Science Framework. RESULTS: The results of this scoping review will provide insights into different flash mob designs, motivations, and the data collection process, contributing to the development of high-quality flash mob data collections in healthcare research.
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Recolección de Datos , Humanos , Recolección de Datos/métodos , Proyectos de Investigación , Atención a la Salud , Investigación sobre Servicios de Salud , InternetRESUMEN
Cholera is a leading cause of mortality in Nigeria. The two most significant predictors of cholera are a lack of access to clean water and poor sanitary conditions. Other factors such as natural disasters, illiteracy, and internal conflicts that drive people to seek sanctuary in refugee camps may contribute to the spread of cholera in Nigeria. The aim of this research is to develop a cholera outbreak risk prediction (CORP) model using machine learning tools and data science. In this study, we developed a CORP model using design science perspectives and machine learning to detect cholera outbreaks in Nigeria. Nonnegative matrix factorization (NMF) was used for dimensionality reduction, and synthetic minority oversampling technique (SMOTE) was used for data balancing. Outliers were detected using density-based spatial clustering of applications with noise (DBSCAN) were removed improving the overall performance of the model, and the extreme-gradient boost algorithm was used for prediction. The findings revealed that the CORP model outcomes resulted in the best accuracy of 99.62%, Matthews's correlation coefficient of 0.976, and area under the curve of 99.2%, which were improved compared with the previous findings. The developed model can be helpful to healthcare providers in predicting possible cholera outbreaks.
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Cólera , Humanos , Cólera/epidemiología , Aprendizaje Automático , Brotes de Enfermedades , Algoritmos , Investigación sobre Servicios de SaludRESUMEN
INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.
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Prioridades en Salud , Humanos , Reino Unido , Investigación sobre Servicios de Salud , Toma de Decisiones Conjunta , InvestigaciónRESUMEN
Patient and public involvement and engagement (PPIE) is critically important in healthcare research. A useful starting point for researchers to understand the scope of PPIE is to review the definition from the National Institute for Health and Care Research (NIHR) as, 'research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them'. PPIE does not refer to participation in research, but to actively shaping its direction. The 'Effectiveness of a decision support tool to optimise community-based tailored management of sleep for people living with dementia or mild cognitive impairment (TIMES)' study is funded through the NIHR programme grant for applied research. TIMES has thoroughly embraced PPIE by ensuring the person's voice is heard, understood, and valued. This editorial showcases how the TIMES project maximised inclusivity, and we share our experiences and top tips for other researchers. We base our reflections on the six key UK standards for public involvement; Inclusive Opportunities, Working Together, Support and Learning, Communications, Impact and Governance. We present our work, which had been co-led by our PPIE leads, academics and partners including, together in dementia everyday, Innovations in Dementia, The UK Network of Dementia Voices (Dementia Engagement & Empowerment Project) and Liverpool Chinese Wellbeing. We have a Lived Experience Advisory Forum on Sleep, which includes people with dementia, family carers, representatives of the South Asian Community and the Chinese community.
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Pueblo Asiatico , Demencia , Humanos , Comunicación , Investigación sobre Servicios de Salud , Aprendizaje , Reino UnidoRESUMEN
BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.
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Participación del Paciente , Humanos , Niño , Adolescente , Proyectos de Investigación , Investigación sobre Servicios de Salud , Participación de la ComunidadRESUMEN
INTRODUCTION: It is now widely recognised that engaging consumers in research activities can enhance the quality, equity and relevance of the research. Much of the commentary about consumer engagement in research focuses on research processes and implementation, rather than dissemination in conference settings. This article offers reflections and learnings from consumers, researchers and conference organisers on the 12th Health Services Research Conference, a biennial conference hosted by the Health Services Research Association of Australia and New Zealand (HSRAANZ). METHOD: We were awarded funds via a competitive application process by Bellberry Limited, a national not-for-profit agency with a focus on improving research quality, to incorporate consumer engagement strategies in conference processes and evaluate their impact. FINDINGS: Strategies included consumer scholarships, a buddy system, designated quiet space and consumer session co-chairs; the reflections explored in this paper were collected in the funded, independent evaluation. Our insights suggest a need for more structured consumer involvement in conference planning and design, as well as the development of specific engagement strategies. CONCLUSION: To move toward active partnership in scientific conference settings, our experience reinforces the need to engage consumers as members in designing and conducting research and in presenting research and planning conference content and processes. PUBLIC CONTRIBUTION: Consumer engagement in research dissemination at conferences is the focus of this viewpoint article. Consumers were involved in the conception of this article and have contributed to authorship at all stages of revisions and edits.
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Participación de la Comunidad , Congresos como Asunto , Humanos , Participación de la Comunidad/métodos , Australia , Investigación sobre Servicios de Salud , Nueva ZelandaRESUMEN
BACKGROUND: The term 'care-experienced' refers to anyone who is currently in care or has been in care at any stage in their life. A complex interplay of factors leads to care-experienced children and young people (CECYP) experiencing poorer oral health and access to dental care than their peers. A rapid review of the co-production of health and social care research with vulnerable children and young people (CYP) was carried out to inform the development of a co-produced research project exploring the oral health behaviours and access to dental services of CECYP. Here, 'co-production' refers to the involvement of CYP in the planning or conduct of research with explicit roles in which they generate ideas, evidence and research outputs. AIM: To learn how to meaningfully involve vulnerable CYP in the co-production of health and social science research. OBJECTIVES: To identify: Different approaches to facilitating the engagement of vulnerable CYP in co-production of health and social science research; different activities carried out in such approaches, challenges to engaging vulnerable CYP in co-production of health and social science research and ways to overcome them and areas of best practice in relation to research co-production with vulnerable CYP. SEARCH STRATEGY: A rapid review of peer-reviewed articles was conducted in six databases (MEDLINE, Embase, SocINDEX, CINAHL, PsycINFO and Web of Science) and grey literature to identify studies that engaged vulnerable CYP in co-approaches to health and social research. MAIN RESULTS: Of 1394 documents identified in the search, 40 were included and analysed. A number of different approaches to co-production were used in the studies. The CYP was involved in a range of activities, chiefly the development of data collection tools, data collection and dissemination. Individual challenges for CYP and researchers, practical and institutional factors and ethical considerations impacted the success of co-production. DISCUSSION AND CONCLUSION: Co-production of health and social science with vulnerable CYP presents challenges to researchers and CYP calling for all to demonstrate reflexivity and awareness of biases, strengths and limitations. Used appropriately and well, co-production offers benefits to researchers and CYP and can contribute to research that reflects the needs of vulnerable CYP. Adherence to the key principles of inclusion, safeguarding, respect and well-being facilitates this approach. PATIENT AND PUBLIC CONTRIBUTION: Members of our patient and public involvement and stakeholder groups contributed to the interpretation of the review findings. This manuscript was written together with a young care leaver, Skye Boswell, who is one of the authors. She contributed to the preparation of the manuscript, reviewing the findings and their interpretation.