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From complexity to parsimony: A systems thinking validation of the multiple streams framework in abortion policy agenda setting. 从复杂到简约:堕胎政策议程设置中多流框架的系统思考验证。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-28 DOI: 10.1186/s12961-025-01392-y
Gabriela Alvarado

Background: Abortion policy is a highly contested area of health policy. Despite international recognition of abortion as a human right, legal restrictions persist in many countries, and recent decades have seen both liberalization and retrenchment of abortion laws. While much research has examined the politics and outcomes of abortion policy reform, less attention has been paid to the upstream process of how abortion emerges on the policy agenda. This study addresses this gap by focusing on agenda setting for abortion policy, using Kingdon's multiple streams framework (MSF) and systems thinking.

Methods: This exploratory study integrates MSF with systems thinking and causal loop diagramming to map the dynamic interactions among government characteristics, policy communities, policy-maker attributes and external events. A purposive review of 19 key works from the MSF literature was conducted, selected for their theoretical contributions and detailed descriptions of stream interactions. Qualitative text coding and quotation analysis were used to identify causal relationships, which were then aggregated into a causal loop diagram. Model validation focused on micro-structure elements, and the framework was tested against two case studies: Ireland and Nicaragua.

Results: Analysis yielded 167 unique elements and 338 causal links, distilled into 81 key variables. The causal loop diagram demonstrates that convergence of the problem, policy and politics streams is shaped by reinforcing and balancing feedbacks, rather than random chance. Key factors influencing agenda setting include party institutionalization, policy entrepreneur effectiveness, social inequality and the gravity of focusing events. The case studies illustrate how variations in political institutions, mobilization efforts and external events can lead to divergent policy trajectories.

Conclusions: This study provides theoretical validation that the parsimonious MSF can account for the complexity of abortion policy agenda setting when integrated with systems thinking. The causal loop diagram identifies actionable leverage points for advocacy and policy reform and offers a dynamic, testable model for understanding agenda setting in contentious policy domains. These findings bridge theoretical innovation with practical relevance, laying a foundation for future empirical research and offering insights for scholars, advocates and decision-makers seeking to influence the policy agenda for abortion and other complex health issues.

背景:堕胎政策是卫生政策中一个极具争议的领域。尽管国际上承认堕胎是一项人权,但许多国家仍然存在法律限制,近几十年来,堕胎法既有自由化的,也有紧缩的。虽然许多研究都考察了堕胎政策改革的政治和结果,但对堕胎如何出现在政策议程上的上游过程的关注较少。本研究通过使用Kingdon的多流框架(MSF)和系统思维,关注堕胎政策的议程设置,解决了这一差距。方法:探索性研究将MSF与系统思维和因果循环图相结合,绘制政府特征、政策群体、决策者属性和外部事件之间的动态交互关系。我们从MSF文献中选取了19篇重要的论文,对它们的理论贡献和流相互作用的详细描述进行了有目的的综述。定性文本编码和引文分析用于确定因果关系,然后将其聚合成因果循环图。模型验证侧重于微观结构元素,并针对爱尔兰和尼加拉瓜两个案例研究对该框架进行了测试。结果:分析得出167个独特的元素和338个因果关系,提炼成81个关键变量。因果循环图表明,问题、政策和政治流的聚合是通过加强和平衡反馈而形成的,而不是随机的。影响议程设置的关键因素包括政党制度化、政策企业家有效性、社会不平等和焦点事件的严重性。案例研究说明了政治体制、动员努力和外部事件的差异如何导致不同的政策轨迹。结论:本研究提供了理论验证,当结合系统思维时,简约的MSF可以解释堕胎政策议程设置的复杂性。因果循环图为倡导和政策改革确定了可操作的杠杆点,并为理解有争议的政策领域的议程设置提供了一个动态的、可测试的模型。这些发现将理论创新与实际关联联系起来,为未来的实证研究奠定了基础,并为寻求影响堕胎和其他复杂健康问题的政策议程的学者、倡导者和决策者提供了见解。
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引用次数: 0
Bridging theory and practice: a qualitative interview study of barriers to and facilitators of research collaborations between academia and public health services in Germany. 衔接理论与实践:德国学术界与公共卫生服务之间研究合作的障碍和促进因素的定性访谈研究。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-27 DOI: 10.1186/s12961-025-01413-w
Laura Arnold, Franziska Vosseberg, Simon Bimczok, Helmut Brand, Timo Clemens, Jan M Stratil, Simone Weyers, Dagmar Starke

Background: Evidence-informed decision-making (EIDM) is essential for developing and implementing health policies and public health measures that promote, maintain and protect population health. Effective EIDM requires equitable collaboration between academia and practice to foster bilateral knowledge translation and exchange (KTE). This study analyses the barriers and facilitators influencing engagement in such research collaborations within Germany's public health service (PHS).

Methods: We conducted 23 key informant interviews with 24 experts engaged in or collaborating with Germany's PHS to explore experiences with PHS research, knowledge transfer, collaboration and training. The interviews, conducted in pairs, were transcribed verbatim and analysed thematically via a coding frame developed through a deductive‒inductive approach. The COM-B Model of Behaviour Change was applied to categorize barriers and facilitators affecting individuals' and organizations' capability, opportunity and motivation to engage in academia‒practice collaboration.

Results: The analysis revealed the importance of combined approaches that integrate informal networks, formal partnerships, research collaborations and capacity-building initiatives to foster local evidence ecosystems, ensuring bilateral KTE between academia and practice to support EIDM at the local level. Ten key barriers and 35 facilitators capable of addressing these challenges were identified. Strategies to address capability and opportunity barriers included workforce development with dedicated research time, on-the-job training, streamlined administrative processes, long-term funding mechanisms, strengthened relationships between academia and PHS and improved access to research infrastructure and local settings. Financial and educational incentives, adequate incentive structures, an evidence-informed culture within the PHS, and equitable partnerships based on mutual recognition were highlighted as essential motivators. Based on these findings, we developed a conceptual framework reflecting the interconnected nature of barriers and facilitators.

Conclusions: Sustainable academia‒practice collaboration is crucial for bridging the knowledge‒action gap and thereby strengthening EIDM in PHS. However, Germany's PHS lacks institutionally anchored partnerships to strengthen bilateral KTE and EIDM at the local level. The proposed KTE framework provides actionable pathways to bridge gaps between academia and PHS, fostering sustainable and effective collaboration. It can be used to systemically assess factors influencing engagement in equitable partnerships and guide the development of solutions tailored to local needs, supporting EIDM processes at the local level.

背景:循证决策(EIDM)对于制定和实施促进、维持和保护人口健康的卫生政策和公共卫生措施至关重要。有效的EIDM需要学术界和实践之间的公平合作,以促进双边知识转化和交流(KTE)。本研究分析了影响德国公共卫生服务(PHS)参与此类研究合作的障碍和促进因素。方法:对24名从事或与德国小灵通合作的专家进行了23次关键信息提供者访谈,探讨小灵通研究、知识转移、合作和培训的经验。访谈是成对进行的,并通过演绎-归纳方法开发的编码框架逐字逐句地进行主题分析。COM-B行为改变模型用于对影响个人和组织参与学术-实践合作的能力、机会和动机的障碍和促进因素进行分类。结果:分析揭示了整合非正式网络、正式伙伴关系、研究合作和能力建设举措的综合方法的重要性,以促进地方证据生态系统,确保学术界和实践之间的双边KTE,以支持地方层面的EIDM。确定了能够应对这些挑战的10个主要障碍和35个促进者。解决能力和机会障碍的战略包括专门研究时间的劳动力发展、在职培训、精简行政流程、长期资助机制、加强学术界与公共卫生服务之间的关系以及改善获得研究基础设施和当地环境的机会。财政和教育激励、适当的激励结构、小灵通内部的循证文化以及基于相互承认的公平伙伴关系被强调为必不可少的激励因素。基于这些发现,我们开发了一个反映障碍和促进因素相互联系性质的概念框架。结论:可持续的学术与实践合作对于弥合知识与行动之间的差距,从而加强小灵通的EIDM至关重要。然而,德国的公共卫生服务缺乏制度性的伙伴关系,无法在地方层面加强双边KTE和EIDM。拟议的KTE框架为弥合学术界和小灵通之间的差距提供了可行的途径,促进了可持续和有效的合作。它可用于系统地评估影响参与公平伙伴关系的因素,并指导制定适合当地需要的解决方案,支持地方一级的EIDM进程。
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引用次数: 0
Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives. 共同创建加拿大自闭症心理健康素养资源:咨询观点的定性分析。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-23 DOI: 10.1186/s12961-025-01403-y
Jonathan A Weiss, Paula Tablon Modica, Caitlyn Gallant, Flora Roudbarani, Courtney Weaver, Aaron Bouma, Lianne Goldsmith, Jonathan Leef, Yona Lunsky

Background: Autistic adults experience disproportionately high rates of mental health challenges and encounter substantial barriers to care. While initiatives aimed at improving mental health literacy (MHL) offer one strategy for addressing these disparities, the processes through which such initiatives are co-produced with autistic adults and caregivers remain underexplored. Co-production - the collaborative development of resources or knowledge between researchers and community members - can enhance the relevance, authenticity, and impact of health initiatives. The central aim of this study was to understand how autistic adults and caregivers experienced their involvement in the co-production of an applied health research initiative. To inform future initiatives, there is a need to understand stakeholder experiences of the co-production process.

Methods: This study examined the experiences of stakeholders engaged in the co-production of a Canadian MHL resource for autistic adults and their families. Although the context of the project focused on MHL, the central aim was to understand how autistic adults and caregivers experienced their involvement in the co-production process. Semi-structured interviews were conducted with 24 autistic adults and caregivers who served as advisors in the Autism Mental Health Literacy Project (AM-HeLP). A reflexive thematic analysis approach was used to identify key experiential themes related to their involvement.

Results: A thematic analysis identified four main stakeholder experience themes: (1) the elements of co-production, (2) the collaboration process, (3) insights gained and (4) emotional impact of involvement.

Conclusions: These findings highlight the critical importance of intentional, inclusive and trauma-informed co-production practices in applied health research. They offer practical guidance for researchers, service providers and policymakers seeking to authentically engage autistic adults and families in the development of health-related resources. Supporting equitable partnerships with autistic adults and caregivers is essential to advancing responsive and person-centred health policy and practice.

背景:自闭症成人经历不成比例的高比率的心理健康挑战,并遇到实质性的障碍护理。虽然旨在提高心理健康素养的举措为解决这些差异提供了一种战略,但与自闭症成年人和护理人员共同制定此类举措的过程仍未得到充分探索。共同生产——研究人员和社区成员之间协作开发资源或知识——可以增强卫生行动的相关性、真实性和影响。本研究的中心目的是了解自闭症成年人和照顾者如何体验他们参与应用健康研究倡议的共同生产。为了为未来的计划提供信息,有必要了解利益相关者对合作生产过程的经验。方法:本研究考察了参与加拿大自闭症成人及其家庭MHL资源联合生产的利益相关者的经验。虽然项目的背景是关注MHL,但中心目标是了解自闭症成年人和护理人员如何参与合作制作过程。研究人员对24名自闭症成年人和在自闭症心理健康素养项目(AM-HeLP)中担任顾问的护理人员进行了半结构化访谈。使用反身性专题分析方法来确定与他们的参与有关的关键经验主题。结果:专题分析确定了四个主要的利益相关者体验主题:(1)合作制作的要素,(2)合作过程,(3)获得的见解,(4)参与的情感影响。结论:这些发现突出了在应用卫生研究中有意、包容和了解创伤的合作实践的关键重要性。它们为研究人员、服务提供者和决策者提供了实际指导,以期真正使自闭症成年人和家庭参与开发与健康有关的资源。支持与自闭症成年人和照料者建立公平的伙伴关系,对于推进应对性和以人为本的卫生政策和做法至关重要。
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引用次数: 0
Introducing PROSPECT: a novel process for prospectively tracking research engagement. 展望:前瞻性跟踪研究参与的新过程。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-23 DOI: 10.1186/s12961-025-01414-9
Melinda Craike, Bojana Klepac, Amy Mowle

Health researchers are increasingly encouraged to engage with nonacademic stakeholders and provide evidence of their engagement. However, evidencing research engagement and advancing the evidence base is challenging, partly because of the lack of available tools to prospectively track research engagement activities. To fill this gap, this Commentary introduces PROcess for Systematic Prospective Engagement Capture and Tracking (PROSPECT), a novel process based on event logging that offers a systematic way to track and measure research engagement activities. The development of PROSPECT was informed by a literature search, a series of reflective practice sessions and application to one of our research programs. PROSPECT includes five phases: (1) determine the purpose, (2) define research engagement and categories of research engagement, (3) determine the information to be recorded for each research engagement activity, (4) determine the data collection system and (5) analyse, present and report. We provide examples of how we are applying each phase. We have used the data collected through PROSPECT in funder reports to describe our engagement activities and to gain insights into patterns of engagement throughout our research program. Whilst PROSPECT offers a promising approach to capturing research engagement data, we have encountered a range of practical, conceptual and technical challenges in applying this process. We suggest some next steps in its development to address these challenges. Once the challenges of applying the process are addressed, PROSPECT will be a valuable tool for researchers, leaders of research institutions and funders.

越来越多的卫生研究人员被鼓励与非学术利益相关者接触,并提供他们参与的证据。然而,证明研究参与和推进证据基础是具有挑战性的,部分原因是缺乏可用的工具来前瞻性地跟踪研究参与活动。为了填补这一空白,本评论介绍了系统性前瞻性参与捕获和跟踪过程(PROSPECT),这是一个基于事件日志的新过程,提供了一种系统的方法来跟踪和测量研究参与活动。PROSPECT的开发是通过文献检索,一系列反思性实践课程和应用于我们的一个研究项目来实现的。展望包括五个阶段:(1)确定目的,(2)定义研究参与和研究参与的类别,(3)确定每个研究参与活动要记录的信息,(4)确定数据收集系统,(5)分析,呈现和报告。我们提供了如何应用每个阶段的示例。我们在资助者报告中使用了通过PROSPECT收集的数据来描述我们的参与活动,并深入了解我们整个研究项目的参与模式。虽然PROSPECT提供了一种很有前途的方法来获取研究参与数据,但在应用这一过程中,我们遇到了一系列实际、概念和技术上的挑战。我们建议在未来的发展中采取一些措施来应对这些挑战。一旦解决了应用该过程的挑战,PROSPECT将成为研究人员、研究机构领导人和资助者的宝贵工具。
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引用次数: 0
Driving health transformation: big pharma's innovation labs revolution. 推动健康转型:大型制药公司的创新实验室革命。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-23 DOI: 10.1186/s12961-025-01415-8
Galo Peralta, Blanca Sánchez

Background: Large pharmaceutical companies are evolving their innovation strategies, moving from closed R&D models towards open, collaborative ecosystems. Innovation labs have emerged as key organizational infrastructures in this shift, designed to accelerate the development, validation and adoption of new healthcare solutions. However, a systematic understanding of industry-led innovation labs remains limited.

Objective: This study aims to comprehensively characterize the structure, strategic focus, activities and outputs of innovation labs promoted by major pharmaceutical companies, and to identify patterns and divergences across different organizational models.

Methods: We conducted a structured literature review in PubMed and an original mapping of innovation labs established by the top 20 global pharmaceutical companies. Data were collected from peer-reviewed publications, official corporate reports and grey literature. Innovation labs were analyzed according to their digital orientation, geographical structure (unicentric versus multicentric), activity domains, stakeholder engagement and innovation outputs.

Results: A total of 102 innovation centres promoted by 14 pharmaceutical companies were included. Most centres demonstrated a strong digital focus, particularly on digital health solutions and remote patient monitoring. Collaboration activities were widely reported (98%), mainly involving universities (92%) and other industries (65%). Support for entrepreneurship was a major theme, reflected in mentoring programs (87%), co-development opportunities (85%) and access to funding (40%). A comparative analysis revealed that multicentric initiatives were significantly more engaged in external collaborations, entrepreneurship promotion and educational activities, and produced higher rates of patents and spin-offs compared with unicentric initiatives. However, unicentric labs were more associated with internal capacity building and early-stage clinical research.

Conclusions: Pharmaceutical innovation labs are pivotal in healthcare transformation, integrating scientific, technological and entrepreneurial approaches. Multicentric and unicentric models offer complementary strengths: multicentric hubs enhance external engagement and scalability, while unicentric labs foster organizational learning and focused research. Understanding and strategically balancing both models could maximize the impact of pharmaceutical innovation infrastructures. Future research should explore longitudinal impacts, patient involvement and the interaction of innovation labs with venture capital ecosystems and regulatory frameworks.

背景:大型制药公司正在发展他们的创新战略,从封闭的研发模式转向开放、协作的生态系统。创新实验室已成为这一转变中的关键组织基础设施,旨在加速新医疗保健解决方案的开发、验证和采用。然而,对行业主导的创新实验室的系统理解仍然有限。目的:对大型制药公司创新实验室的结构、战略重点、活动和产出进行综合表征,并识别不同组织模式下创新实验室的模式和差异。方法:我们在PubMed上进行了结构化的文献综述,并对全球排名前20的制药公司建立的创新实验室进行了原始映射。数据收集自同行评审的出版物、官方公司报告和灰色文献。根据创新实验室的数字化方向、地理结构(单中心与多中心)、活动领域、利益相关者参与和创新产出对其进行了分析。结果:共纳入14家药企推动的102家创新中心。大多数中心表现出对数字的高度重视,特别是在数字保健解决方案和远程病人监测方面。合作活动被广泛报道(98%),主要涉及大学(92%)和其他行业(65%)。支持创业是一个主要主题,反映在指导计划(87%)、共同发展机会(85%)和获得资金(40%)上。一项比较分析显示,与单中心倡议相比,多中心倡议更多地参与外部合作、促进创业和教育活动,并产生更高的专利率和附带利益。然而,单中心实验室更多地与内部能力建设和早期临床研究有关。结论:药物创新实验室是医疗转型的关键,是科学、技术和创业途径的结合。多中心和单中心模型提供了互补的优势:多中心中心增强了外部参与和可扩展性,而单中心实验室促进了组织学习和重点研究。理解和战略平衡这两种模式可以最大限度地发挥药物创新基础设施的影响。未来的研究应该探索纵向影响、患者参与以及创新实验室与风险投资生态系统和监管框架的相互作用。
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引用次数: 0
Mapping health evidence ecosystem in Brazil: a mixed-methods study protocol for developing a framework. 绘制巴西卫生证据生态系统:制定框架的混合方法研究方案。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-23 DOI: 10.1186/s12961-025-01399-5
Rebeca Cardoso Pedra, Tamille Sales Dias, Maritsa Carla de Bortoli, Luis Phillipe Nagem Lopes, Giulia Vaz da Silva, Fernanda Campos de Almeida Carrer, Silvio Barberato-Filho, Cristiane de Cássia Bergamaschi, Danielle Maria de Souza Serio Dos Santos, Luciane Cruz Lopes, Laura Dos Santos Boeira

Background: Evidence ecosystems play a vital role in informing and shaping policy; however, little is known about how these systems function, particularly in diverse national contexts. This article presents a mixed-methods study designed to be the first to systematically map and characterize Brazil's health evidence ecosystem, focusing on key institutions, actors, and practices across the country. We aim to map, describe and analyse the ecosystem of production, use and dissemination of policy evidence in Brazil's five regions.

Methods: We will adopt a five-step mixed-method approach to understand Brazil's health evidence ecosystem comprehensively. Five steps will be undertaken: (a) cultural adaptation of two published situation analysis tools, (b) digital ethnography to identify and categorize organizations that are evidence producers, users, or intermediaries as well the types of evidence demanded, (c) autoethnography workshops with selected organizations, (d) interviews to apply an evidence institutionalization and (e) focus groups to produce a situation analysis of institutional practices, governance and the overall environment for evidence use in policy in each of the five Brazilian regions.

Discussion: This study combines diverse tools to understand how evidence is produced, disseminated and utilized in Brazil. The study of regional differences and institutional practices can help to identify barriers and facilitators to the effective use of evidence in policy. Furthermore, it may inform the development of strategies to strengthen the evidence ecosystem in Brazil and serve as a roadmap for other countries that aiming to conduct a comprehensive evidence ecosystem analysis.

背景:证据生态系统在提供信息和制定政策方面发挥着至关重要的作用;然而,人们对这些系统如何运作知之甚少,特别是在不同的国家背景下。本文介绍了一项混合方法研究,旨在首次系统地绘制和描述巴西的卫生证据生态系统,重点关注全国的关键机构、行动者和实践。我们的目标是绘制、描述和分析巴西五个地区政策证据的生产、使用和传播生态系统。方法:采用五步混合方法全面了解巴西健康证据生态系统。将采取五个步骤:(a)两种已发布的情况分析工具的文化适应性,(b)数字人种学,以识别和分类作为证据生产者、用户或中介的组织以及所需证据的类型,(c)与选定组织的自动人种学研讨会,(d)应用证据制度化的访谈,以及(e)焦点小组,对制度实践进行情况分析。巴西五个地区的治理和政策中证据使用的总体环境。讨论:本研究结合了多种工具来了解证据是如何在巴西产生、传播和利用的。对区域差异和体制做法的研究有助于确定在政策中有效利用证据的障碍和促进因素。此外,它可以为巴西制定加强证据生态系统的战略提供信息,并为其他旨在进行全面证据生态系统分析的国家提供路线图。
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引用次数: 0
Integrative research and innovation strategy for rare diseases. Insights from the 5-year European joint programme on rare diseases, including analysis to inform recommendations for future actions. 罕见病综合研究与创新战略。5年欧洲罕见病联合规划的见解,包括为今后行动建议提供信息的分析。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-16 DOI: 10.1186/s12961-025-01389-7
María Del Carmen Sánchez-González, Rodrigo Sarmiento-Suárez, Laura Lee Cellai, Clément Moreau, Marcin Bartoszewicz, Piotr Fiedor, Domenica Taruscio, Marta de Santis, Manuel Posada de la Paz, Daria Julkowska, Claudio Carta, Eva Bermejo-Sánchez

Background: The European Joint Programme on Rare Diseases (EJP RD) was an initiative that sought to integrate different rare disease strategies into a research ecosystem. This paper summarizes the work of the dedicated work package on Integrative Research and Innovation Strategy and outlines recommendations to facilitate alignment with National Plans and Strategies for Rare Diseases.

Methods: We carried out three periodic surveys (in 2020, 2021 and 2023) on the status of national plans and strategies (NP/NS) for rare diseases in EJP RD member countries. Using the feedback from the surveys and other sources, we developed an annual mapping of research and innovation needs and their alignment with the EJP RD programme. A review of the findings and progress from these approaches - including two strategic policy workshops and the development of National Mirror Groups - informed the recommendations to bridge the gap between national efforts and European strategies.

Results: A total of 34 countries responded to at least one survey. Implementation is uneven: 76% of countries have had their NP/NS approved at some point, but renewals are irregular. For EU13 countries, the most frequent barrier to developing, improving and translating rare disease (RD) research results was funding. In terms of the Programme's activities covering mapped needs, we achieved global coverage of 65.8%, with greater coverage of needs for both the diagnostic pathway and the treatment pathway (71%). Four National Mirror Groups were developed during the Programme's first 5 years, and a further seven were established by mid-2024.

Conclusions: Despite recent progress in establishing a research ecosystem for rare diseases in Europe, several challenges remain and should be addressed. These include availability and accessibility of diagnostics, medicines and medical devices across Europe, inequalities between and within countries, compliance with the FAIR data principles and the lack of a comprehensive policy framework to integrate different rare diseases initiatives. Next actions need to strengthen the coordination and alignment of funding and national policies, innovation in the translation of research results and the reach of a holistic research ecosystem. National Mirror Groups will play an important role in this respect.

背景:欧洲罕见病联合规划(EJP RD)是一项旨在将不同罕见病战略纳入研究生态系统的倡议。本文总结了综合研究和创新战略专项工作包的工作,并概述了促进与国家罕见病计划和战略保持一致的建议。方法:我们在2020年、2021年和2023年对EJP RD成员国的罕见病国家计划和战略(NP/NS)现状进行了三次定期调查。根据调查和其他来源的反馈,我们制定了研究和创新需求的年度地图,并将其与EJP研发计划相结合。对这些方法的结果和进展的审查- -包括两次战略政策讲习班和国家镜像小组的发展- -为缩小国家努力与欧洲战略之间差距的建议提供了依据。结果:共有34个国家对至少一项调查做出了回应。执行情况参差不齐:76%的国家在某种程度上获得了NP/NS的批准,但更新是不规律的。对于欧盟13国来说,发展、改进和转化罕见病研究成果的最常见障碍是资金。就覆盖已绘制需求的规划活动而言,我们实现了65.8%的全球覆盖率,其中诊断途径和治疗途径的需求覆盖率更高(71%)。在该计划的前5年中,发展了4个国家镜像小组,到2024年中期,又建立了7个国家镜像小组。结论:尽管最近在欧洲建立罕见病研究生态系统方面取得了进展,但仍存在一些挑战,应该加以解决。这些问题包括诊断、药品和医疗设备在整个欧洲的可得性和可及性、国家之间和国家内部的不平等、遵守公平数据原则以及缺乏综合政策框架来整合不同的罕见病举措。下一步的行动需要加强资金和国家政策的协调和统一,加强研究成果转化方面的创新,扩大整体研究生态系统的覆盖面。国家镜像集团将在这方面发挥重要作用。
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引用次数: 0
A path forward for the implementation of shared decision-making in valvular heart disease: global joint recommendations from clinicians, patients and researchers. 在瓣膜性心脏病中实施共同决策的前进道路:临床医生、患者和研究人员的全球联合建议
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-16 DOI: 10.1186/s12961-025-01393-x
Sandra B Lauck, Martha Gulati, Krystina B Lewis, Nicola Straiton, Johanna J M Takkenberg, Peyman Sardari Nia, Sandra McGonigle, Karen Padilla, Ellen Ross, Hélène Eltchaninoff, Bernard Prendergast

Background: Shared decision-making (SDM) is widely endorsed in international guidelines for the treatment of valvular heart disease (VHD). Despite evidence that the process improves outcomes and does not increase the burden of consultations, SDM has not been adopted as a standard of care across regions and diverse health systems.

Methods: We conducted a 3-phase study co-led by clinicians and people with lived experience using an integrated knowledge translation approach guided by the knowledge-to-action framework. In a preparatory phase, we conducted exploratory semi-structured interviews with 19 international and diverse experts to identify barriers and enablers to SDM in VHD; we used thematic analysis to identify the major issues to inform project development. We convened an in-person meeting of patients and patient advocates (n = 9), clinicians (n = 11) and researchers (n = 3) from 10 countries to build joint recommendations. Lastly, we conducted a series of local and international meetings to validate the findings and inform future initiatives.

Results: Challenges identified included (1) concerns about clinicians' availability and time requirements, (2) uncertainty about how to practice SDM and (3) absence of regional data to evaluate SDM in VHD. The joint recommendations clustered on five global areas of focus and six sets of recommendations tailored to regional contexts and cultural norms. Final recommendations on (1) preparing patients and carers, (2) training healthcare teams and (3) creating a supportive system were further enhanced by VHD knowledge users' input in various regional settings.

Conclusions: This first report co-led by diverse stakeholders offers a practice and policy-ready roadmap to strengthen the implementation and evaluation of SDM in VHD.

背景:共同决策(SDM)在治疗瓣膜性心脏病(VHD)的国际指南中得到广泛认可。尽管有证据表明该进程改善了结果,并且没有增加咨询负担,但SDM尚未被各区域和各种卫生系统采用为一种护理标准。方法:我们进行了一项由临床医生和有生活经验的人共同领导的三期研究,采用知识到行动框架指导的综合知识翻译方法。在准备阶段,我们与19位国际专家进行了探索性半结构化访谈,以确定VHD中SDM的障碍和推动因素;我们使用专题分析来确定主要问题,以便为项目开发提供信息。我们召集了来自10个国家的患者和患者倡导者(n = 9)、临床医生(n = 11)和研究人员(n = 3)的面对面会议,以建立联合建议。最后,我们举行了一系列本地和国际会议,以验证调查结果并为未来的举措提供信息。结果:确定的挑战包括(1)对临床医生可用性和时间要求的担忧,(2)如何实践SDM的不确定性,以及(3)缺乏评估VHD SDM的区域数据。联合建议集中在五个全球重点领域和根据区域情况和文化规范量身定制的六套建议。VHD知识使用者在不同地区的投入进一步加强了关于(1)让病人和护理人员做好准备、(2)培训医疗团队和(3)建立支持系统的最终建议。结论:这份由不同利益攸关方共同领导的首份报告为加强VHD可持续发展机制的实施和评估提供了一个实践和政策就绪的路线图。
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引用次数: 0
Using a community geography place-based approach to explore the impact of a regional research infrastructure in England. 使用基于地点的社区地理方法探索英格兰区域研究基础设施的影响。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-16 DOI: 10.1186/s12961-025-01380-2
Bryony Porter, Claire Thompson, Wendy Wills

Background: There is a need to critically examine both how research infrastructures interact with the populations they serve and the perceived effects of these interactions. This paper reports on a contribution analysis-informed study of a research infrastructure and its place-based approach to working with local communities - the National Institute for Health and Care Research Applied Research Collaboration East of England (NIHR ARC EoE). The aims were (1) to understand the perceived impact of the NIHR ARC EoE place-based approach and (2) to explore its processes and challenges.

Methods: From April-June 2023, we interviewed 11 research staff from the infrastructure (NIHR ARC EoE) and nine community-based partners who had worked with NIHR ARC EoE since 2019. The interviews explored experiences of developing research partnerships, learnings, outcomes and challenges. The interviews were audio-recorded, transcribed and subject to a thematic analysis. The findings were subsequently mapped onto a Research Contributions Framework.

Results: The place-based approach was characterized as relationships-driven and community-focused in building research infrastructure, which improved motivation and commitment to local involvement in research. Three perceived impacts were highlighted: working with underserved communities, cross-sector relationship development and building skills and research capacity. Key barriers included differing expectations of research timescales, a fear of problematizing communities, and intensive resource requirements for developing foundational level relationships.

Conclusions: The place-based approach enabled opportunities to work with (rather than do to) communities previously underserved by research and where the development of trusting relationships was key. However, strategic efforts to dismantle bureaucratic barriers must be developed to maximize reach and potential. The findings present an effective approach to understanding the impact of a place-based approach to working with communities. The value of a place-based approach is widely applicable to any research infrastructure aiming to collaborate, involve and engage communities in research.

背景:有必要严格检查研究基础设施如何与他们所服务的人群相互作用,以及这些相互作用的感知效应。本文报道了一项基于贡献分析的研究,该研究基于研究基础设施及其与当地社区合作的基于地点的方法——英国东部国家卫生与保健研究所(NIHR ARC EoE)。目的是:(1)了解国家卫生研究院ARC EoE基于地点方法的感知影响;(2)探索其过程和挑战。方法:从2023年4月至6月,我们采访了11名来自基础设施(NIHR ARC EoE)的研究人员和9名自2019年以来与NIHR ARC EoE合作的社区合作伙伴。访谈探讨了发展研究伙伴关系、学习、成果和挑战的经验。采访录音、抄写,并进行专题分析。这些发现随后被映射到研究贡献框架中。结果:基于地方的方法在建立研究基础设施方面具有关系驱动和以社区为中心的特点,这提高了当地参与研究的动机和承诺。会议强调了三个可感知的影响:与服务不足的社区合作、发展跨部门关系以及建立技能和研究能力。主要障碍包括对研究时间尺度的不同期望,对社区问题的恐惧,以及发展基础水平关系的密集资源需求。结论:基于地点的方法使我们有机会与以前研究服务不足的社区一起工作(而不是去做),在那里发展信任关系是关键。但是,必须作出战略性努力,消除官僚障碍,以最大限度地扩大覆盖面和潜力。研究结果提供了一种有效的方法来理解基于地点的方法对社区工作的影响。基于地点的方法的价值广泛适用于任何旨在协作、让社区参与和参与研究的研究基础设施。
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引用次数: 0
Implementing system dynamics in hospital services to improve operational efficiency: An empirical research study. 在医院服务中实施系统动力学以提高运作效率:实证研究。
IF 3.2 2区 医学 Q1 HEALTH POLICY & SERVICES Pub Date : 2025-10-15 DOI: 10.1186/s12961-025-01394-w
Hongxin Huang, Xiaojun Huang, Zihan Zhang, Hao Chen, Wei Wei, Wei Lu

Objective: This study investigates operational efficiency in public general hospitals using a system dynamics (SD) model, focusing on resource allocation, patient flow and policy interventions. It explores the interactions between human resources, financial subsidies and patient visitation rates and their impact on hospital performance.

Methods: An SD model was developed to simulate various scenarios, incorporating data on hospital capacity, staffing and financial inputs, along with patient flow dynamics. Key performance metrics, including bed occupancy rate (BOR), average length of stay (ALOS), average cost per visit and workload index, were analysed under different policy scenarios.

Results: Simulation of four policy scenarios revealed that increased fiscal subsidies (scenario 2) consistently improved operational efficiency by reducing ALOS, staff workload and cost per visit. In contrast, scenarios involving human resource cuts or rapid patient growth triggered adverse feedback loops that undermined performance.

Conclusions: The SD model effectively captures the dynamic interactions within hospital operations and enables assessment of policy interventions over time. Enhanced government funding contributes most positively to efficiency, while demand surges and resource reductions introduce system strain and performance trade-offs.

目的:运用系统动力学(SD)模型研究公立综合医院的运营效率,重点关注资源配置、患者流动和政策干预。它探讨了人力资源、财政补贴和病人探视率之间的相互作用及其对医院绩效的影响。方法:开发了一个SD模型来模拟各种情况,包括医院容量、人员配备、财务投入以及患者流动动态等数据。主要绩效指标,包括床位入住率(BOR)、平均住院时间(ALOS)、平均每次就诊成本和工作量指数,在不同的政策情景下进行了分析。结果:对四种政策情景的模拟显示,财政补贴的增加(情景2)通过减少ALOS、工作人员工作量和每次就诊成本,持续提高了运营效率。相比之下,涉及人力资源削减或患者快速增长的情况引发了不利的反馈循环,从而破坏了绩效。结论:SD模型有效地捕获了医院运营中的动态相互作用,并能够随着时间的推移对政策干预进行评估。加强政府资助对效率的贡献最为积极,而需求激增和资源减少则会带来系统压力和性能权衡。
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引用次数: 0
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