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A roadmap towards Ireland's membership of BBMRI-ERIC. 爱尔兰加入BBMRI-ERIC的路线图。
HRB open research Pub Date : 2025-05-29 eCollection Date: 2025-01-01 DOI: 10.12688/hrbopenres.14089.1
Amina Arar, Heidi Annuk, Sean O Hynes, Emma Snapes, Michael Kerin, Sonja Khan, Nicola Miller
{"title":"A roadmap towards Ireland's membership of BBMRI-ERIC.","authors":"Amina Arar, Heidi Annuk, Sean O Hynes, Emma Snapes, Michael Kerin, Sonja Khan, Nicola Miller","doi":"10.12688/hrbopenres.14089.1","DOIUrl":"10.12688/hrbopenres.14089.1","url":null,"abstract":"<p><strong>Background: </strong>BioBANC Symposium has become a key forum for the Irish biobanking community. The third annual event focused on networking and quality, featuring a workshop to explore the role and value of networked biobanking for Ireland. The Director General of BBMRI-ERIC advanced these discussions by addressing an audience of interdisciplinary experts, high-level stakeholders, and policymakers from the Irish biobanking community, as well as representatives from the Health Research Charities Ireland (HRCI), the National Clinical Trials Office (NCTO), the European Clinical Research Infrastructure Network (ECRIN-ERIC) research infrastructure, and the Department of Health.</p><p><strong>Methods: </strong>A panel discussion brought together an array of experts from patient advocacy, clinical trials, pharmaceutical industry, government, healthcare policy and BBMRI-ERIC representation to explore the integration of Ireland into the BBMRI-ERIC network. This diverse panel discussed strategies to enhance Ireland's biobanking capabilities and leverage international collaborations. Themes explored included the benefits, gaps and changes needed if Ireland was to consider membership of BBMRI-ERIC. VEVOX live polling was used to gauge audience views and questions on posed topics, enabling interactive audience participation and capturing real-time feedback to enrich the discussion.</p><p><strong>Results: </strong>Substantial benefits that BBMRI-ERIC membership would bring for Ireland were highlighted, including enhanced infrastructure, standardised practices, and greater economic opportunities. Attendees also delved into how Ireland could address current gaps and align its biobanking operations with broader European standards. The discussion identified several critical themes and recommendations to address the need for funding, legislative support, education, public engagement, and strategic planning.</p><p><strong>Conclusion: </strong>This article aims to encapsulate the discussions and outcomes of BioBANC Symposium III, focusing on the strategic moves Ireland must consider harnessing the full potential of its biobanking community. It serves not just as a record of proceedings but as a guide for action, urging stakeholders at all levels to collaborate towards a unified goal.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"8 ","pages":"50"},"PeriodicalIF":0.0,"publicationDate":"2025-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12038341/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144032128","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Co-Design of a website for women with pelvic organ prolapse: A study protocol. 女性盆腔器官脱垂网站的联合设计:一项研究方案。
HRB open research Pub Date : 2025-05-29 eCollection Date: 2023-01-01 DOI: 10.12688/hrbopenres.13742.2
Maria-Louise Carroll, Catherine Doody, Cliona O' Sullivan, Carla Perrotta, Brona M Fullen
{"title":"Co-Design of a website for women with pelvic organ prolapse: A study protocol.","authors":"Maria-Louise Carroll, Catherine Doody, Cliona O' Sullivan, Carla Perrotta, Brona M Fullen","doi":"10.12688/hrbopenres.13742.2","DOIUrl":"10.12688/hrbopenres.13742.2","url":null,"abstract":"<p><strong>Background: </strong>Despite high reported prevalence of pelvic organ prolapse (POP), women report difficulties accessing evidence-based and reliable information about the condition. Many rely on social media and other popular and highly visible internet platforms which have been found to contain poor quality information that is difficult for the average patient to understand. The aim of the study is to co-design an information website for premenopausal women with POP. The website design will be based on the Website Developmental Model for the Healthcare Consumer (WDMHC) framework.</p><p><strong>Methods: </strong>A four phase process will be utilised as per the WDMHC framework: 1) User, task and environmental analysis; 2) Functional and representational analysis; 3) Cognitive walkthrough, keystroke level model, heuristic testing; 4) Content based testing, expert testing and user-based testing.Ethics approval has been obtained (LS-23-19-Carroll-Ful). Two groups of stakeholders will be recruited (i) patient group (ii) healthcare professional (HCP) group. Patient participants will be recruited from an online pelvic floor dysfunction (PFD) support group (n=950 members). A website designer and HCP stakeholders involved in the multidisciplinary team caring for women with POP will be invited to participate.Both groups will participate in separate co-design online workshops. Focus group workshops will be video-recorded, transcribed and imported into NVivo. Themes and subthemes will be developed.The website will be designed and disseminated to all participants for feedback. Cognitive walkthrough and heuristic testing will be undertaken. Following this, necessary modifications will be made to the website. Participants will then complete a modified System Usability Scale (SUS) and the eHealth Impact Questionnaire, while five HCPs will complete the DISCERN instrument.</p><p><strong>Conclusion: </strong>This study will inform the design and testing of an information website for women with POP. The website design and content will be informed by patient and HCP stakeholder voices and the health literacy literature.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"6 ","pages":"37"},"PeriodicalIF":0.0,"publicationDate":"2025-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576183/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41241795","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Exploring how health inequalities are conceptualised and measured in patient experience surveys in acute care: a protocol for a scoping review. 探索如何在急性护理患者经验调查中概念化和衡量健康不平等:范围审查的协议。
HRB open research Pub Date : 2025-05-28 eCollection Date: 2024-01-01 DOI: 10.12688/hrbopenres.13998.1
David Healy, John Gilmore, Jenny King, Jenny McSharry, Oonagh Meade, Éidín Ní Shé, Lorna Sweeney, Conor Foley, Chris Noone
{"title":"Exploring how health inequalities are conceptualised and measured in patient experience surveys in acute care: a protocol for a scoping review.","authors":"David Healy, John Gilmore, Jenny King, Jenny McSharry, Oonagh Meade, Éidín Ní Shé, Lorna Sweeney, Conor Foley, Chris Noone","doi":"10.12688/hrbopenres.13998.1","DOIUrl":"10.12688/hrbopenres.13998.1","url":null,"abstract":"<p><strong>Introduction: </strong>Measuring patient experience has become standard practice in many countries. However, despite the widespread awareness of the impact of health inequalities on various aspects of health, including patient experience, a comprehensive examination of whether and how health inequalities are measured in patient experience surveys has yet to be completed. The ways in which these surveys conceptualise health inequalities may have important implications for how information about inequalities in patient experience is reported and used to allocate resources and plan quality improvement in health services.</p><p><strong>Objective: </strong>The objective of this scoping review is to map measured and overlooked health inequalities in patient experience surveys in acute care and explore what factors potentially explain current conceptualisations and measurement practices of these health inequalities. Inclusion criteria: Papers and survey programmes that contain survey materials relating to adult patient experience measurement in any acute care context will be included. No limits will be placed the personal characteristics of people who completes the survey.</p><p><strong>Inclusion criteria: </strong>Papers and survey programmes that contain survey materials relating to adult patient experience measurement in any acute care context will be included. No limits will be placed the personal characteristics of people who completes the survey.</p><p><strong>Methods: </strong>A search strategy was developed with an information specialist. The database search will be limited to after September 2021. Reviews, opinion pieces, letters, editorials, conference proceedings and other such sources will be excluded as a publication source. Grey literature searches will be completed, and relevant experts will also be contacted to identify any patient experience surveys not captured through database or grey literature searches. Non-English papers will be included only if resources allow. Two independent reviewers will complete title and abstract, and full-text screening. Additional reviewers will resolve any conflicts. A data extraction form developed by the review team is being used. The extracted data will be analysed using Critical Discourse Analysis, a qualitative method used to examine how power, dominance and inequality are enacted in text.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"7 ","pages":"74"},"PeriodicalIF":0.0,"publicationDate":"2025-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11895858/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143607334","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
RxTrends: An R-based Shiny Application for Visualising Open Data on Prescribed Medications in Ireland. RxTrends:一个基于r的闪亮应用程序,用于可视化爱尔兰处方药的开放数据。
HRB open research Pub Date : 2025-05-27 eCollection Date: 2025-01-01 DOI: 10.12688/hrbopenres.14080.2
Ahmed Hassan Ali, Michelle Flood, Ciara Kirke, Molly Mattsson, Mary E Walsh, Emma Wallace, Derek Corrigan, Tom Fahey, Fiona Boland, Frank Moriarty
{"title":"RxTrends: An R-based Shiny Application for Visualising Open Data on Prescribed Medications in Ireland.","authors":"Ahmed Hassan Ali, Michelle Flood, Ciara Kirke, Molly Mattsson, Mary E Walsh, Emma Wallace, Derek Corrigan, Tom Fahey, Fiona Boland, Frank Moriarty","doi":"10.12688/hrbopenres.14080.2","DOIUrl":"10.12688/hrbopenres.14080.2","url":null,"abstract":"<p><strong>Background: </strong>The Health Service Executive (HSE) in Ireland releases monthly reports on prescription dispensing claims and payments relating to community drug schemes. This paper describes the implementation of an R-based Shiny application that facilitates interactive visualisation and analysis of trends in medication prescribing and improves the data's practical value, and presents use cases focused on drug utilisation and medication policy questions.</p><p><strong>Methods: </strong>Using Primary Care Reimbursement Service (PCRS) data provided by the HSE relating to the means-tested General Medical Services (GMS) scheme covering approximately one-third of the population, an R-based Shiny application was developed. This application uses monthly prescribing and cost data from 2016 up to the most recent data available (currently October 2024) relating to the 100 most commonly prescribed medications (by frequency and cost) and all therapeutic groups. The application leverages a range of R packages to enable users to select medications, therapeutic groups, and physiological systems to explore and compare prescribing and cost trends over time.</p><p><strong>Results: </strong>The RxTrends Shiny application effectively integrates PCRS data, providing multiple functionalities that allow for visualisation of dispensing trends of multiple medications, therapeutic groups and physiological systems. Graphs are available across multiple prescribing frequency and cost metrics and can be restricted to a selected time period. The 'compare' function visualises the proportion of prescribing/cost a selected medication or therapeutic group accounts for within a therapeutic group or physiological system. Use cases relating to Ireland's Preferred Drug Initiative, availability of generic products and reference pricing, and seasonality of drug utilisation are presented.</p><p><strong>Conclusion: </strong>The application provides an interactive interface for stakeholders to visualise and monitor prescribing patterns using data from monthly PCRS reports. The application increases access to and usability of PCRS data for various audiences for whom it may be of interest, including researchers, healthcare professionals, policymakers and the general public.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"8 ","pages":"36"},"PeriodicalIF":0.0,"publicationDate":"2025-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12130776/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144217808","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Mapping barriers, enablers and implementation determinants to shared models of care for physical health and sexual wellbeing among young people with mental health difficulties using the Consolidated Framework for Implementation Research: A scoping review protocol. 利用《实施研究综合框架:范围审查议定书》,为有精神健康困难的年轻人的身体健康和性健康保健共同模式绘制障碍、促进因素和实施决定因素图。
HRB open research Pub Date : 2025-05-12 eCollection Date: 2025-01-01 DOI: 10.12688/hrbopenres.14032.2
Allyson J Gallant, John Paul Lyne, Karen O'Connor, Greg Sheaf, Shaakya Anand-Vembar, Donal O'Keeffe, Caroline Wilson, Yulia Kartalova-O'Doherty, Louise Doyle, Mary Cannon, Leona Ryan, Gary Donohoe, David McEvoy, David Cotter, Olivia Longe, Colm McDonald, Agnes Higgins, Rebecca Murphy, Sara Burke, Catherine D Darker
{"title":"Mapping barriers, enablers and implementation determinants to shared models of care for physical health and sexual wellbeing among young people with mental health difficulties using the Consolidated Framework for Implementation Research: A scoping review protocol.","authors":"Allyson J Gallant, John Paul Lyne, Karen O'Connor, Greg Sheaf, Shaakya Anand-Vembar, Donal O'Keeffe, Caroline Wilson, Yulia Kartalova-O'Doherty, Louise Doyle, Mary Cannon, Leona Ryan, Gary Donohoe, David McEvoy, David Cotter, Olivia Longe, Colm McDonald, Agnes Higgins, Rebecca Murphy, Sara Burke, Catherine D Darker","doi":"10.12688/hrbopenres.14032.2","DOIUrl":"10.12688/hrbopenres.14032.2","url":null,"abstract":"<p><strong>Background: </strong>Approximately one in eight people live with mental health difficulties, with onset commonly occurring in youth. It is critical to ensure care addresses all aspects of health, including physical health and sexual wellbeing needs, to achieve positive recovery outcomes. Connecting primary and secondary healthcare providers and service users through shared models of care is a critical aspect of this. The objectives of this scoping review will be to 1) identify and describe the implementation of shared models of care which address the mental health of young people and their physical health and/or sexual wellbeing needs, and 2) identify the determinants of implementing these models of care.</p><p><strong>Protocol: </strong>Following Joanna Briggs Institute guidelines, studies will be included if they describe shared models of care for young people (aged 10-25) in any healthcare setting, specifically addressing mental health and physical health or sexual wellbeing needs. The review will employ the Consolidated Framework for Implementation Research (CFIR) to organise and assess findings. A librarian developed the search strategy, which will be applied to Web of Science, Medline, Embase, CINAHL, and PsycINFO databases. Two independent reviewers will screen titles, abstracts and full texts, followed by data extraction and critical appraisal of included studies. Discrepancies at all stages will be resolved through discussion or by a third reviewer. Screening results will be summarised in a PRISMA flow diagram. Narrative summaries, supported by tables and figures where applicable, will address the review's objectives. Findings will undergo thematic analysis, with implementation determinants mapped deductively to CFIR.</p><p><strong>Discussion: </strong>Findings will inform the adaptation of implementation strategies to support the implementation of policy for improving healthcare delivery to young people with mental health difficulties.</p><p><strong>Registration: </strong>Open Science Framework ( osf.io/rj783).</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"8 ","pages":"28"},"PeriodicalIF":0.0,"publicationDate":"2025-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12141993/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144251172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
MAintAin Activity in Arthritis: A study protocol of the co-development and feasibility testing of a physical activity maintenance intervention. 关节炎的维持活动:一项共同开发和身体活动维持干预的可行性测试的研究方案。
HRB open research Pub Date : 2025-04-28 eCollection Date: 2024-01-01 DOI: 10.12688/hrbopenres.14002.2
Suzanne McDonough, Aoife Stephenson, Chloe Grimmett, Kathleen Bennett, Noreena Coyle, Stacey Grealis, Claire Kinneavy, Oliver Fitzgerald, Helen French, Maria Stokes, Aisling Walsh, Mick Thacker, Deirdre Hurley Osing, David French
{"title":"MAintAin Activity in Arthritis: A study protocol of the co-development and feasibility testing of a physical activity maintenance intervention.","authors":"Suzanne McDonough, Aoife Stephenson, Chloe Grimmett, Kathleen Bennett, Noreena Coyle, Stacey Grealis, Claire Kinneavy, Oliver Fitzgerald, Helen French, Maria Stokes, Aisling Walsh, Mick Thacker, Deirdre Hurley Osing, David French","doi":"10.12688/hrbopenres.14002.2","DOIUrl":"10.12688/hrbopenres.14002.2","url":null,"abstract":"<p><strong>Background: </strong>Despite the wealth of evidence demonstrating the health benefits of physical activity (PA), people with arthritis commonly do not meet recommended PA levels. Whilst various programmes support people with arthritis to become active, most individuals reduce their level of PA after completion of a structured exercise programme. This research aims to co-develop and feasibility test a PA maintenance intervention for those living with arthritis, after exit from a structured exercise programme.</p><p><strong>Methods: </strong>Intervention development was guided by the INDEX framework for developing complex interventions.Phase 1, Evidence Synthesis: Bring together existing evidence, clinical guidelines and behavior change theories for PA maintenance in arthritis, to develop an intervention logic model.Phase 2, Observation and qualitative study: Conduct an observational analysis of a physiotherapy led structured exercise programme for those living with arthritis, to understand what behaviour change components are used and what might support PA maintenance. Followed by a qualitative exploration of PA maintenance barriers, facilitators and strategies for those who have participated in the classes, their family members/friends and the delivering physiotherapist.Phase 3, Finalise intervention prototype: Results from phases 1 and 2, will be triangulated to inform potential intervention options. Those living with arthritis/key stakeholders will be invited to participatory workshops to refine intervention content and delivery modes.Phase 4, Feasibility Study: The final phase is a pre-post, mixed methods feasibility evaluation of the newly developed multicomponent PA maintenance intervention for people living with arthritis, after completion of a physiotherapy led structured exercise programme.</p><p><strong>Discussion: </strong>Intervention development will bring together PA maintenance theory and evidence with user input and other key contextual factors. User input will be achieved by collaboration with two embedded patient researchers and a wider Public Patient Involvement (PPI) panel to ensure diverse patient experiences and perspectives are heard and inform programme design.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"7 ","pages":"75"},"PeriodicalIF":0.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12082073/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144095742","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The long-term general practice healthcare of women with a history of gestational diabetes: A Scoping Review Protocol. 有妊娠糖尿病史的妇女的长期全科保健:一项范围审查方案。
HRB open research Pub Date : 2025-04-10 eCollection Date: 2025-01-01 DOI: 10.12688/hrbopenres.14022.2
James O'Flynn, Rita McMorrow, Tony Foley, Rita Forde, Sheena McHugh, Christine Newman, Aisling A Jennings
{"title":"The long-term general practice healthcare of women with a history of gestational diabetes: A Scoping Review Protocol.","authors":"James O'Flynn, Rita McMorrow, Tony Foley, Rita Forde, Sheena McHugh, Christine Newman, Aisling A Jennings","doi":"10.12688/hrbopenres.14022.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.14022.2","url":null,"abstract":"<p><strong>Introduction: </strong>Gestational Diabetes Mellitus (GDM) is a hyperglycaemic condition diagnosed during pregnancy. GDM is strongly associated with future development of type 2 diabetes and cardiovascular disease. Lifestyle and pharmacological interventions can reduce the risk of developing type 2 diabetes. General practice is the recommended setting for long-term follow-up of women with a history of GDM. However, rates of follow-up are suboptimal. The evidence around long-term general practice healthcare for women with a history of GDM has not previously been reviewed.</p><p><strong>Aims: </strong>The aim of this scoping review is to explore the current evidence base for the long-term care of women with a history of GDM in general practice.</p><p><strong>Study design: </strong>The study described by this protocol is a scoping review. The study design was informed by Joanna Briggs Institute methodology.</p><p><strong>Methods: </strong>Empirical qualitative and quantitative research studies published since 2014 will be identified from a search of the following databases: MEDLINE (Ovid), EMBASE (Elsevier), CINAHL, PsycINFO, Academic Search Complete and SocIndex. The review will identify key characteristics of the literature. Framework analysis will be used to map the findings against the Chronic Care Model, a primary care-based framework that sets out the core components for optimal long-term healthcare.</p><p><strong>Results: </strong>A numerical descriptive summary (using frequencies) will describe the overall extent of literature, and the range and distribution of its component parts, including the geographical and economic settings, research methods, interventions, outcomes and findings. The qualitative analysis will map interventions and descriptions of care to components of the chronic care model. Research gaps will be reported, and research needs and priorities will be suggested.</p><p><strong>Conclusion: </strong>The findings of this scoping review will have the potential to inform future research efforts in the area.</p><p><strong>Registration: </strong>This protocol has been registered in Open Science Framework ( https://osf.io/bz2vh).</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"8 ","pages":"31"},"PeriodicalIF":0.0,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11992512/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143993772","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Development and evaluation of a stroke research Public Patient Involvement Panel. 卒中研究公众患者参与小组的发展与评估。
HRB open research Pub Date : 2025-04-07 eCollection Date: 2024-01-01 DOI: 10.12688/hrbopenres.13838.2
Siobhán O'Reilly, Aoife Whiston, Aine Cronin, Eva Corbett, Amy O'Mahony, Molly X Manning, Pauline Boland, Katie Robinson, Rose Galvin, Joanna M Allardyce, Mike Butler, Jim Bradley, Jon Salsberg, Margaret O'Connor, Patricia Pond, Eva Murphy, Liam G Glynn, Nora Cunningham, Edel Hennessy, Sara Hayes
{"title":"Development and evaluation of a stroke research Public Patient Involvement Panel.","authors":"Siobhán O'Reilly, Aoife Whiston, Aine Cronin, Eva Corbett, Amy O'Mahony, Molly X Manning, Pauline Boland, Katie Robinson, Rose Galvin, Joanna M Allardyce, Mike Butler, Jim Bradley, Jon Salsberg, Margaret O'Connor, Patricia Pond, Eva Murphy, Liam G Glynn, Nora Cunningham, Edel Hennessy, Sara Hayes","doi":"10.12688/hrbopenres.13838.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.13838.2","url":null,"abstract":"<p><strong>Background: </strong>Public and patient involvement (PPI) is important in stroke research to ensure that research conducted reflects the priorities and needs of people after stroke. Several factors have been found to affect PPI, including location of the research and time requirements for participation. The incidence of stroke is rising, and can result in symptoms including fatigue, depression, and physical/cognitive impairments.</p><p><strong>Aims: </strong>1) Describe the development of a PPI panelpanel and a healthcare professional panelpanel for stroke rehabilitation research and 2) to explore the perspectives of the members of the PPI groups on being involved in the research process.</p><p><strong>Methods: </strong>A stakeholder panel consisting of up to 20 people with stroke, members of the public and healthcare professionals will be formed. A pragmatic purposive sampling technique using snowball sampling will be used to recruit members. The PPI panel will meet four times and will be supported by the guidelines developed from the INVOLVE framework. The PPI panel will be involved as co-researchers in the conceptualisation of future stroke rehabilitation research, the delivery of such studies, the analysis and dissemination of findings. Following the development of the panel, we will conduct a semi-structured focus groups to collect qualitative data, examining the perspectives of members. Data will be transcribed and analysed using Braun and Clarke's Reflexive Thematic Analysis. This will result in a set of themes and subthemes describing participants' opinions and experience of being on a PPI panel in stroke rehabilitation research.</p><p><strong>Conclusions: </strong>PPI is an essential part of research in stroke. Stakeholders can provide key insights into the research processes. The results of this qualitative study will provide insight into the barriers and enablers of their participation in PPI in stroke rehabilitation research.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"7 ","pages":"22"},"PeriodicalIF":0.0,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12008718/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143999425","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Impact of guidance issued during COVID-19 to expand take-home doses of opioid agonist treatment (OAT) in Ireland: protocol for a population-based analysis of prescribing practices and patient outcomes 2018 to 2023. 2019冠状病毒病期间发布的指南对爱尔兰扩大阿片类激动剂治疗(OAT)带回家剂量的影响:2018年至2023年处方实践和患者结果基于人群的分析方案。
HRB open research Pub Date : 2025-04-07 eCollection Date: 2025-01-01 DOI: 10.12688/hrbopenres.14044.2
Gráinne Cousins, Louise Durand, Kathleen Bennett, Andy O'Hara, Des Crowley, Suzi Lyons, Eamon Keenan
{"title":"Impact of guidance issued during COVID-19 to expand take-home doses of opioid agonist treatment (OAT) in Ireland: protocol for a population-based analysis of prescribing practices and patient outcomes 2018 to 2023.","authors":"Gráinne Cousins, Louise Durand, Kathleen Bennett, Andy O'Hara, Des Crowley, Suzi Lyons, Eamon Keenan","doi":"10.12688/hrbopenres.14044.2","DOIUrl":"10.12688/hrbopenres.14044.2","url":null,"abstract":"<p><strong>Background: </strong>It is increasingly suggested that clinical guidelines and practices be updated to permanently expand relaxation around access to opioid agonist treatment (OAT) take-home doses after COVID-19. Despite a risk of OAT drug diversion, flexibility in take-home doses is valued by patients and associated with improved quality of life and retention. However, few studies have examined the effects of changes to take-home dose policies on prescribing practices and patient outcomes, with mixed results.</p><p><strong>Aims: </strong>This protocol relates to three inter-related studies. The first study will examine the impact of guidance issued on March 13th 2020 to all clinicians involved in the delivery of OAT to give the maximum number of take-home doses having given due consideration to the safety of the patient, on prescribing practices for take-home doses of methadone and buprenorphine in primary care. The second study will examine the association between increased take-home doses of OAT following March 13th 2020 guidance and treatment discontinuation in primary care. The third study will examine methadone-related deaths in Ireland before and after the guidance issue, and whether methadone-related deaths varied by whether the deceased was on OAT treatment at the time of death.</p><p><strong>Methods: </strong>Retrospective observational studies will be carried out. The first study will use a time series design to examine changes in prescribing practices of take-home doses. The second study will use a retrospective cohort study design with proportional hazard Cox models to evaluate the association between increased take-home doses and treatment discontinuation. The third study will use a repeated cross-sectional study design with interrupted time series analysis, stratified by OAT treatment status, to assess changes in methadone-related deaths.</p><p><strong>Discussion: </strong>It is anticipated that the studies will generate evidence with potential to inform both clinical and policy decision making with respect to take-home dosing of OAT.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"8 ","pages":"32"},"PeriodicalIF":0.0,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12120409/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144182498","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Life After Stroke and Supportive Stroke Pathways: Protocol For A Rapid Realist Review. 脑卒中后的生活和支持脑卒中途径:快速现实主义回顾的方案。
HRB open research Pub Date : 2025-03-25 eCollection Date: 2025-01-01 DOI: 10.12688/hrbopenres.14034.2
Olive Lennon, Mary O'Neill, Killian Walsh, Frances Horgan
{"title":"Life After Stroke and Supportive Stroke Pathways: Protocol For A Rapid Realist Review.","authors":"Olive Lennon, Mary O'Neill, Killian Walsh, Frances Horgan","doi":"10.12688/hrbopenres.14034.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.14034.2","url":null,"abstract":"<p><strong>Background: </strong>Ever-growing numbers of individuals are surviving stroke and living with the consequences. Life after stroke is a key pillar in addressing the burden of stroke for the remaining lifespan for those with stroke. No consensus on how to best promote agency and fulfilment in life after stroke or the resources required to achieve this currently exists.</p><p><strong>Methods: </strong>In this realist review protocol we outline the methods we will use to gain an understanding of supporting Life after Stroke through the development of programme theories. These will consist of context-mechanism-outcome configurations (CMOCs) and will acknowledge the resources required. The review will follow the RAMESES five-stage structured methodology to (1) define the scope of the review, and the development of initial programme theories for supporting life after stroke, (2) develop a comprehensive search strategy to identify relevant research, (3) review primary studies and extract data, (4) synthesise evidence (5) refine programme theories iteratively throughout the process using an Expert Panel and reference group, to including stroke researchers, health care professionals working in stroke care, people with lived experience of stroke and carers, and stroke support agencies.</p><p><strong>Conclusion: </strong>This realist review aims to conceptualise supports for Life after Stroke. The CMOCs developed will help explain how generative causation within the life after stroke pathway works. The findings will help inform policy and practice and inform future realist evaluations of Life after Stroke support pathways.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"8 ","pages":"10"},"PeriodicalIF":0.0,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11986413/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143999779","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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