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Responsive patient care in Israel: A qualitative study of hospital rules and regulations 以色列的病人护理服务:对医院规章制度的定性研究。
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-26 DOI: 10.1016/j.healthpol.2024.105170
Keren Semyonov-Tal
Hospital rules and regulations can contribute to standardizing care, streamlining processes, and improving the quality of care. Over the past decade, hospitals in Israel have introduced written rules and regulations for staff that provide guidance on quality control, patient safety, and the patient-provider relationship. This study aimed to explore how these written guidelines, when implemented, can promote responsive care for inpatients. Using a thematic analysis, the study analyzed the content of staff guidelines from six Israeli hospitals. The analysis found that hospital rules and regulations provide similar, relatively precise instructions with regard to improving the responsiveness to and dignity of care of patients. The guidelines address three essential aspects of responsiveness - disclosing medical information and respecting the patients’ autonomy and physical space. The guidelines highlight that healthcare providers should implement security measures to safeguard medical information, respect patients' autonomy, involve patients in decision-making, and provide adequate physical space to maintain their privacy and modesty. The guidelines contribute to ensuring patients’ legal and ethical rights. Policymakers should consider introducing and implementing the dimensions of responsiveness that were stressed by Israeli hospitals' rules and regulations. Further research is needed to confirm the relevance of the various rules and regulations for improving the quality of care provided to patients.
医院的规章制度有助于实现医疗标准化、简化流程和提高医疗质量。在过去的十年中,以色列的医院为员工制定了成文的规章制度,为质量控制、患者安全和患者与医护人员的关系提供指导。本研究旨在探讨这些书面指南在实施过程中如何促进对住院病人的响应性护理。研究采用主题分析法,对六家以色列医院的员工指南内容进行了分析。分析发现,医院的规章制度在提高对病人的响应能力和护理尊严方面提供了类似的、相对精确的指示。这些指导方针涉及响应能力的三个基本方面--披露医疗信息、尊重病人的自主权和物理空间。指南强调,医疗服务提供者应采取安全措施保护医疗信息,尊重患者的自主权,让患者参与决策,并提供足够的物理空间以维护患者的隐私和尊严。指导方针有助于确保患者的法律和道德权利。政策制定者应考虑引入和实施以色列医院规章制度所强调的响应能力的各个层面。还需要开展进一步的研究,以确认各种规章制度对于提高病人护理质量的相关性。
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引用次数: 0
Investigating the relationship between health and gender equality: What role do maternal, reproductive, and sexual health services play? 调查健康与性别平等之间的关系:孕产妇保健、生殖保健和性保健服务发挥什么作用?
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-25 DOI: 10.1016/j.healthpol.2024.105171
Yuxi Wang , Aleksandra Torbica
Examining the causal nexus between health services and gender equality is of paramount significance in policy formulation and academic inquiry. This paper concentrates on maternal, sexual, and reproductive health, offering a critical narrative review of empirical research exploring the causal relationship between enhanced women's health, stemming from either overall healthcare amelioration or specific interventions, and broader gender equality objectives. A conceptual framework is devised to elucidate the causal pathways between health and gender equality across various dimensions. The final review encompasses 30 empirical papers, revealing both direct and indirect effects of improved maternal, reproductive, and sexual health outcomes on labour participation and educational investment, with fertility decisions and autonomy serving as primary intermediary factors. Evidence predominantly indicates that interventions like contraception, family planning, and abortion policies yield enduring effects beyond health, influencing reproductive choices. Specific medical procedures, such as caesarean deliveries and sterilization, also impact fertility and labour market outcomes. Furthermore, public healthcare infrastructure contributes to combating gender-based violence by facilitating incident reporting and access to protection. Recognizing, documenting, and monitoring these co-benefits arising from improved women's health are pivotal for delineating future health sector priorities and advancing the global gender equality and sustainable development agenda.
研究医疗服务与性别平等之间的因果关系对政策制定和学术研究具有重要意义。本文以孕产妇健康、性健康和生殖健康为重点,对实证研究进行了批判性的叙述性回顾,探讨了通过改善整体医疗保健或采取特定干预措施提高妇女健康水平与更广泛的性别平等目标之间的因果关系。本文设计了一个概念框架,以阐明健康与性别平等在不同层面上的因果关系。最后的综述包括 30 篇实证论文,揭示了孕产妇、生殖和性健康成果的改善对劳动参与和教育投资的直接和间接影响,生育决定和自主权是主要的中间因素。主要证据表明,避孕、计划生育和人工流产政策等干预措施产生了超越健康的持久效果,影响了生育选择。剖腹产和绝育等特定医疗程序也会影响生育率和劳动力市场的结果。此外,公共医疗保健基础设施通过促进事件报告和获得保护,有助于打击性别暴力。认识、记录和监测改善妇女健康所带来的这些共同惠益,对于确定未来卫生部门的优先事项以及推进全球性别平等和可持续发展议程至关重要。
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引用次数: 0
Exploring assisted dying policies for mature minors: A cross jurisdiction comparison of the Netherlands, Belgium & Canada 探索针对成年未成年人的协助死亡政策:荷兰、比利时和加拿大的跨司法管辖区比较。
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-24 DOI: 10.1016/j.healthpol.2024.105172
Sydney Campbell , Alexandra Cernat , Avram Denburg , Fiona Moola , Jeremy Petch , Jennifer Gibson
Medical Assistance in Dying (MAID) was decriminalized in Canada in 2016 for individuals 18 years or older who met eligibility criteria. Currently, individuals younger than 18 years are legally permitted to access an assisted death in the Netherlands and Belgium, but not in Canada. To-date, no work has compared factors shaping the policy processes and outcomes in these three countries. Therefore, our objective was to explore the legalities of assisted dying for minors in the Netherlands and Belgium, along with how each jurisdiction arrived at their respective policies and why the trajectory differed in Canada. After screening and compiling peer-reviewed and grey literature, we used Yanow's interpretive method for comparative work to review included materials. We framed findings using Hajer's discourse coalition theory. The Dutch and Belgian contexts relied upon a parliamentary approach in legalizing assisted dying for mature minors that emphasized suffering, whereas Canada's approach was initiated by a Supreme Court of Canada decision and emphasized human rights. While the Netherlands and Belgium viewed mature minors as capable to make decisions about assisted dying, the Canadian position on mature minors’ decisional capacity with respect to assisted dying remains unsettled. This work contributes to understanding how context and sociopolitical values shape assisted dying legislations and treatment of mature minors, while highlighting areas requiring further study amid ongoing debate in Canada.
加拿大于 2016 年将符合资格标准的 18 岁或 18 岁以上个人的死亡医疗协助(MAID)非刑罪化。目前,荷兰和比利时在法律上允许 18 岁以下的人获得协助死亡,但加拿大不允许。迄今为止,还没有任何研究对这三个国家的政策过程和结果的影响因素进行过比较。因此,我们的目标是探索荷兰和比利时未成年人辅助死亡的合法性,以及每个司法管辖区如何制定各自的政策,为什么加拿大的政策轨迹不同。在筛选和汇编了同行评议和灰色文献后,我们使用了 Yanow 的比较工作解释法来审阅收录的资料。我们使用哈杰尔的话语联盟理论来构建研究结果。荷兰和比利时在使未成年患者的协助死亡合法化时采用的是强调痛苦的议会方法,而加拿大的方法则是由加拿大最高法院的一项决定发起的,强调的是人权。荷兰和比利时认为成年未成年人有能力对协助死亡做出决定,而加拿大对成年未成年人在协助死亡方面的决定能力的立场仍未确定。这项工作有助于理解背景和社会政治价值观如何影响未成年人的协助死亡立法和待遇,同时强调了在加拿大正在进行的辩论中需要进一步研究的领域。
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引用次数: 0
Health effects of introducing an unconditional child benefit in Poland: Evidence from a difference in differences analysis 波兰引入无条件儿童福利对健康的影响:差异分析的证据
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-21 DOI: 10.1016/j.healthpol.2024.105169
Michal Brzezinski, Artur Yaniuk
The association between income and health is well-documented, yet the impact of unconditional child benefits on health in high-income countries remains unclear. This study evaluates the health effects of a generous unconditional child transfer introduced in Poland in 2016. We employed a difference-in-differences methodology using 2010–2019 data from the European Union Statistics on Income and Living Conditions (EU-SILC). Our analysis compared health outcomes between parents eligible for the child benefit and a control group of childless individuals and parents of ineligible children. The introduction of the child benefit was associated with a 2.7 percentage point increase in reporting very good self-perceived health among beneficiaries. The improvement was more significant among the lower-income half, and there was a notable decrease in unmet medical and dental needs by 1.4 percentage points. The policy significantly improved health outcomes, suggesting the potential of unconditional cash transfers to enhance health in high-income countries, particularly for economically disadvantaged groups.
收入与健康之间的关系有据可查,但高收入国家无条件儿童福利对健康的影响仍不明确。本研究评估了波兰 2016 年推出的慷慨的无条件儿童转移对健康的影响。我们利用欧盟收入和生活条件统计(EU-SILC)中 2010-2019 年的数据,采用了差分法。我们的分析比较了有资格享受儿童福利的父母与无子女个人和不符合条件的儿童父母组成的对照组之间的健康结果。儿童福利的引入使受益人自我感觉健康状况非常好的比例提高了 2.7 个百分点。在低收入的一半人中,这种改善更为明显,未满足的医疗和牙科需求明显减少了 1.4 个百分点。该政策极大地改善了健康状况,表明无条件现金转移有可能改善高收入国家的健康状况,特别是经济弱势群体的健康状况。
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引用次数: 0
Freedom of choice for specialized consultation in Portugal: An observational analysis of response to hospital quality 葡萄牙专科门诊的自由选择:对医院质量反应的观察分析
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-17 DOI: 10.1016/j.healthpol.2024.105163
Joana Vales , Joana Cima , Julian Perelman

Background

Portugal introduced freedom of choice for initial specialist consultations in 2016 to boost quality via competition. However, for tangible benefits, specialized care demand must be quality-elastic. This research probes the relation between choosing hospital out the residence area and their quality traits.

Methods

We used data for all primary consultation requests from primary care centres to hospitals from 1/1/2017 to 31/12/2018 (n = 3,346,335). We modelled the choice of a hospital as a function of its quality characteristics, adjusting for area-based socioeconomic variables using logistic regressions.

Results

Results indicate that patients and their general practitioners consider quality indicators when choosing a hospital. Higher mortality, longer waiting times and higher readmission rates at the hospital of origin were positively associated with the patient's choice. Freedom of choice is less used when the distance to the hospital of origin increases. Similar patterns were observed for larger hospitals and those with academic status.

Discussion

This study underscores the relevance of quality considerations in hospital selection by both patients and their general practitioners (GPs). The implications are two-fold. Firstly, improving quality appears as a factor to increase attractiveness, so that hospital competition may lead to improved health outcomes. Secondly, it highlights that hospital financing should include an activity dimension in which “money follows the patient”, otherwise no financial incentive exists to improve quality. Hence, the current hospital financing model and the limited possibility to choose in certain areas limit the potential of quality improvement based on enhanced attractivity. Decision makers should be aware that quality is a driver of patient choice, as our study demonstrates, and adapt the system to take advantage of this reality.

背景葡萄牙于 2016 年推出了专家初诊自由选择制度,以通过竞争提高质量。然而,要想获得切实利益,专科医疗需求必须具有质量弹性。本研究探讨了在居住区外选择医院与医院质量特征之间的关系。方法我们使用了2017年1月1日至2018年12月31日期间基层医疗中心向医院提出的所有初诊请求数据(n = 3,346,335)。结果结果表明,患者及其全科医生在选择医院时会考虑质量指标。原住地医院的死亡率较高、等待时间较长和再入院率较高与患者的选择呈正相关。与原住地医院的距离越远,选择自由度越小。这项研究强调了患者及其全科医生(GPs)在选择医院时对医疗质量的考虑。其意义有两方面。首先,提高质量似乎是增加医院吸引力的一个因素,因此医院竞争可能会带来更好的医疗效果。其次,研究强调医院融资应包括 "钱跟着病人走 "的活动维度,否则就不存在提高质量的经济激励。因此,目前的医院融资模式和在某些领域的有限选择限制了在增强吸引力的基础上提高质量的潜力。决策者应该意识到,正如我们的研究结果所表明的那样,质量是患者选择的驱动力,并调整制度以利用这一现实。
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引用次数: 0
The impact of NHS outsourcing of elective care to the independent sector on outcomes for patients, healthcare professionals and the United Kingdom health care system: A rapid narrative review of literature 英国国家医疗服务系统(NHS)将择期医疗服务外包给独立机构对患者、医护人员和英国医疗系统的影响:快速文献综述。
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-16 DOI: 10.1016/j.healthpol.2024.105166
Simon Fletcher , Oya Eddama , Michael Anderson , Rachel Meacock , Vasudha Wattal , Pauline Allen , Stephen Peckham
The NHS is increasingly turning to the independent sector, primarily to alleviate elective care backlogs. However, implications for the healthcare system, patients and staff are not well understood.
This paper provides a rapid narrative review of research evidence on NHS-funded elective care in the independent sector (IS) and the impact on patients, professionals, and the health care system. The aim was to identify the volume and evaluate the quality of the literature whilst providing a narrative synthesis.
Studies were identified through Medline, CINAHL, Econlit, PubMed, Web of Science and Scopus. The quality of the included studies was assessed in relation to study design, sample size, relevance, methodology and methodological strength, outcomes and outcome reporting, and risk of bias.
Our review included 40 studies of mixed quality. Many studies used quantitative data to analyse outcome trends across and between sectors. Independent sector providers (ISPs) can provide high-volume and low-complexity elective care of equivalent quality to the NHS, whilst reducing waiting times in certain contexts. However it is clear that the provision of NHS-funded elective care in the IS has a range of implications for public provision. These surround access and outcome inequalities, financial sustainability and NHS workforce impacts. It will subsequently be important for future empirical work to incorporate these caveats, providing a more nuanced interpretation of quantitative improvements.
国家医疗服务系统越来越多地转向独立部门,主要是为了缓解择期治疗的积压。然而,人们对其对医疗系统、患者和员工的影响还不甚了解。本文对独立部门(IS)中由国家医疗服务体系(NHS)资助的择期医疗的研究证据以及对患者、专业人员和医疗体系的影响进行了快速叙述性回顾。目的是确定文献的数量并评估其质量,同时提供一份叙述性综述。研究通过 Medline、CINAHL、Econlit、PubMed、Web of Science 和 Scopus 进行了识别。对所纳入研究的质量评估涉及研究设计、样本大小、相关性、方法和方法学优势、结果和结果报告以及偏倚风险。我们的综述包括 40 项质量参差不齐的研究。许多研究使用了定量数据来分析跨部门和部门间的结果趋势。独立医疗服务提供者(ISPs)可以提供与国家医疗服务体系质量相当的高容量、低复杂性的选择性医疗服务,同时在某些情况下还能减少候诊时间。但很明显,在独立部门提供由国民医疗服务体系(NHS)资助的选择性医疗服务会对公共医疗服务产生一系列影响。这些影响包括就医机会和结果的不平等、财务可持续性以及对国民医疗服务体系劳动力的影响。因此,未来的实证工作必须将这些注意事项纳入其中,从而对定量改进做出更细致的解释。
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引用次数: 0
Enhancing rural community engagement through palliative care networks: A scoping review 通过姑息关怀网络加强农村社区参与:范围界定审查
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-14 DOI: 10.1016/j.healthpol.2024.105165
Lina María Vargas-Escobar , Erwin Hernando Hernández-Rincón , Marta Ximena León-Delgado , Sofia Elizabeth Muñoz-Medina , Nidia Mantilla-Manoslava , Juan Esteban Correa-Morales , Jose David Amorocho-Morales , Miguel Antonio Sánchez-Cárdenas

Palliative care is a crucial discipline that alleviates suffering and enhances the quality of life for patients with life-limiting illnesses and their families. However, there is gap globally between the need for and availability of these services. Integrated health service networks offer a promising solution to address this gap in rural areas, by coordinating care across different levels and sectors. This scoping review aimed at identifying the key characteristics of palliative care networks in rural communities. A broad search without time limits was conducted in four databases. Analysis and synthesis were conducted using Latent Dirichlet Allocation topic modeling. Sixteen studies were included, revealing four key themes regarding the development of palliative care networks in rural areas: community engagement is essential to secure the reach of rural networks, tailored approaches acknowledging diversity enrich these networks, team-centric efforts involving stakeholder coordination ensure successful implementation, and a multifaceted approach—empowering non-traditional stakeholders and incorporating technology resources into primary health services—dynamizes palliative care delivery in rural areas. These findings underscore the potential of collaborative and innovative approaches to enhance the accessibility and effectiveness of palliative care in underserved rural communities. Further cost-effectiveness studies are warranted to better understand the impact these strategies can have on health systems.

姑息关怀是一门重要的学科,它能减轻生命垂危疾病患者及其家属的痛苦,提高他们的生活质量。然而,在全球范围内,这些服务的需求与可获得性之间存在差距。综合医疗服务网络通过协调不同层面和部门的医疗服务,为解决农村地区的这一差距提供了一个前景广阔的解决方案。本次范围界定综述旨在确定农村社区姑息关怀网络的主要特征。我们在四个数据库中进行了无时间限制的广泛搜索。采用潜在德里希勒分配主题模型进行了分析和综合。共纳入了 16 项研究,揭示了有关农村地区姑息关怀网络发展的四个关键主题:社区参与对于确保农村网络的覆盖范围至关重要;量身定制的方法承认了多样性,丰富了这些网络;以团队为中心、涉及利益相关者协调的努力确保了成功实施;多方面的方法--赋予非传统利益相关者权力并将技术资源纳入初级医疗服务--使农村地区的姑息关怀服务更加多样化。这些研究结果突出表明,在服务不足的农村社区,协作和创新的方法具有提高姑息关怀的可及性和有效性的潜力。为了更好地了解这些策略对医疗系统的影响,有必要开展进一步的成本效益研究。
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引用次数: 0
Development of a practical framework and indicators for monitoring integrated long-term health and care needs and service use 为监测长期健康和护理综合需求及服务使用情况制定实用框架和指标
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-14 DOI: 10.1016/j.healthpol.2024.105167
Hongsoo Kim , Nan-He Yoon , Dongmin Seo , Yoon Kim
This case study presents an evidence-building approach to support policy planning for integrated health and care delivery for older adults. We developed an integrated needs-assessment framework to monitor the complex long-term medical and care needs of older individuals, using routinely collected, standardized needs-assessment and utilization data from the public health and long-term care (LTC) insurance systems in South Korea. We also developed a set of misuse indicators and analyzed service utilization patterns, while accounting for their varying types of needs. Approximately 11 % of older Koreans were identified as having complex long-term medical and care needs, which were categorized into four distinct need groups. More than one-third of those in the higher-medical/lower-care needs group stayed in LTC hospitals for six months or more during the year, and about one-third of those in the higher-medical/higher-care needs group inappropriately resided in LTC facilities, where medical services are limited. The newly developed integrated needs-assessment framework and misuse indicator set provide practical tools for monitoring the extent and nature of complex needs, as well as patterns of over- or under-utilization of health and care services over time. The empirical evidence gathered here highlights the need for reforms in South Korea's health and LTC systems.
本案例研究介绍了一种循证方法,以支持为老年人提供综合医疗和护理服务的政策规划。我们利用韩国公共卫生和长期护理(LTC)保险系统定期收集的标准化需求评估和使用数据,开发了一个综合需求评估框架,以监测老年人复杂的长期医疗和护理需求。我们还制定了一套滥用指标,并分析了服务利用模式,同时考虑到了他们不同类型的需求。约有 11% 的韩国老年人被确认为有复杂的长期医疗和护理需求,并被分为四个不同的需求群体。在医疗需求较高/护理需求较低的群体中,超过三分之一的人在一年中住在长期护理医院六个月或更长时间,而在医疗需求较高/护理需求较高的群体中,约有三分之一的人不适当地住在医疗服务有限的长期护理设施中。新开发的综合需求评估框架和滥用指标集提供了实用工具,可用于监测复杂需求的程度和性质,以及随着时间的推移过度或过度使用医疗和护理服务的模式。本文收集的经验证据突出表明,韩国的医疗和长期护理系统需要进行改革。
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引用次数: 0
Drug company methodologies used for reporting in the UK pharmaceutical industry payment transparency database between 2015 and 2019: A content analysis 2015 年至 2019 年英国制药业支付透明度数据库中用于报告的制药公司方法:内容分析
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-13 DOI: 10.1016/j.healthpol.2024.105155
James Larkin , Britta Matthes , Mohamed Azribi , Conor Kearns , Shai Mulinari , Emily Rickard , Frank Moriarty , Tom Fahey , Piotr Ozieranski

Pharmaceutical companies spend hundreds of millions of pounds on marketing/R&D-related payments annually to healthcare organisations and healthcare professionals. UK pharmaceutical industry self-regulatory bodies require member companies who sign up to their code of conduct to publish details of their payments. They are also required to publish the methodologies underlying these payments, namely methodological notes. This study aimed to analyse UK pharmaceutical companies’ methodological notes and their adherence to the Association of the British Pharmaceutical Industry code of conduct and other relevant guidance. We conducted a content analysis of methodological notes for the years 2015, 2017 and 2019 and assessed companies’ adherence to self-regulatory bodies’ requirements and recommendations for methodology disclosure. Overall, 90 companies made payment disclosures in all three years, publishing 269 methodological notes. We found gaps in adherence to self-regulatory requirements. Only 3 (3.3 %) companies provided clear information for all self-regulatory body recommendations and regulations in all of their notes. Companies also varied in their approaches to important areas. For example, of the 244 notes with clear information on VAT management, 36.1 % (N = 88) included VAT, 30.3 % (N = 74) excluded VAT, and 33.6 % (N = 82) had multiple rules for VAT. There was evidence of widespread non-adherence to self-regulatory requirements. This suggests flaws with self-regulation and a need for greater enforcement of rules or consideration of a publicly mandated disclosure system.

制药公司每年花费数亿英镑向医疗机构和医疗专业人员支付与营销/研发相关的费用。英国制药行业自律机构要求签署其行为准则的成员公司公布其付款的详细信息。它们还必须公布这些付款所依据的方法,即方法说明。本研究旨在分析英国制药公司的方法说明及其对英国制药工业协会行为准则和其他相关指南的遵守情况。我们对 2015 年、2017 年和 2019 年的方法说明进行了内容分析,并评估了公司对自律机构关于方法披露的要求和建议的遵守情况。总体而言,90 家公司在这三年中都进行了付款披露,发布了 269 份方法说明。我们发现在遵守自律要求方面存在差距。只有 3 家公司(3.3%)在其所有说明中提供了所有自律机构建议和规定的明确信息。各公司在重要领域的做法也不尽相同。例如,在 244 份有明确增值税管理信息的说明中,36.1%(N = 88)包括增值税,30.3%(N = 74)不包括增值税,33.6%(N = 82)对增值税有多重规定。有证据表明,不遵守自律要求的现象十分普遍。这表明自律存在缺陷,需要加大规则的执行力度,或考虑建立公开授权的披露制度。
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引用次数: 0
The modernisation of newborn screening as a pan-European challenge – An international delphi study 新生儿筛查现代化是一项泛欧挑战--国际德尔菲研究
IF 3.6 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-13 DOI: 10.1016/j.healthpol.2024.105162
Sandra Gillner , Gulcin Gumus , Edith Gross , Georgi Iskrov , Ralitsa Raycheva , Georgi Stefanov , Rumen Stefanov , Anne-Sophie Chalandon , Alicia Granados , Julian Nam , Andreas Clemens , Carl Rudolf Blankart

Newborn screening is a public health measure to diagnose rare diseases at birth, thereby minimising negative effects of late treatment. Genomic technologies promise an unprecedented expansion of screened diseases at low cost and with transformative potential for newborn screening programmes. However, barriers to the public funding of genomic newborn screening are poorly understood, particularly in light of the heterogenous European newborn screening landscape. This study therefore aims to understand whether international newborn screening experts share a common understanding of the barriers to fund genomic newborn screening. For this purpose, we convened 21 European newborn screening experts across a range of professions and national backgrounds in a Delphi study. Stable consensus, determined via the Wilcoxon matched-pairs signed-ranks test, was found via three consecutive survey rounds for all presented barriers. Experts generally judged the scenario of genomic newborn screening being available to every newborn in seven years to be unlikely, identifying treatability and the absence of counselling and a skilled workforce as the most significant barriers to public funding. We identify value re-definition for rare disease treatments, centralisation of genomic expertise, and international research consortia as avenues for pan-European actions which build on the consensus achieved by our Delphi panel.

新生儿筛查是一项公共卫生措施,可在新生儿出生时诊断出罕见疾病,从而将后期治疗的负面影响降至最低。基因组技术有望以低成本前所未有地扩大筛查疾病的范围,并为新生儿筛查计划带来变革潜力。然而,人们对基因组新生儿筛查的公共资助障碍知之甚少,特别是考虑到欧洲新生儿筛查的异质性。因此,本研究旨在了解国际新生儿筛查专家是否对基因组新生儿筛查的资助障碍有共同的理解。为此,我们召集了 21 位不同专业和国家背景的欧洲新生儿筛查专家进行德尔菲研究。通过 Wilcoxon 匹配对符号秩检验,我们在连续三轮调查中就所有提出的障碍达成了稳定的共识。专家们普遍认为,7 年内为所有新生儿提供基因组新生儿筛查的可能性不大,可治疗性、缺乏咨询和熟练的劳动力是公共资金的最大障碍。我们认为,重新定义罕见病治疗的价值、集中基因组专业技术和国际研究联盟是在德尔菲小组达成的共识基础上采取泛欧行动的途径。
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引用次数: 0
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