Health systems

卫生系统
  • 文章类型: Journal Article
    背景:非专科研究生医师对脊柱麻醉护理的任务分担,被称为医务人员(MO),通常在印度农村医疗机构中使用,以减轻劳动力的限制。在标准化的教育课程之后,我们试图评估MOs的脊髓麻醉失败率是否不低于顾问麻醉师(CA)。
    方法:我们进行了随机,在泰米尔纳德邦和恰蒂斯加尔邦的三家农村医院进行非劣效性试验,印度。18岁以上围手术期风险较低(ASAI&II)的患者随机接受MO或CA护理。在审判之前,MOs接受了基于任务的麻醉培训,包括远程访问的讲座,基于模拟的培训和直接观察麻醉程序和术中护理。主要结局指标是脊髓麻醉失败,非劣效性为5%。次要结局指标包括围手术期和术后并发症的发生率。
    结果:在2019年7月12日至2020年6月8日期间,共有422例接受脊髓麻醉护理的外科手术患者被随机分配接受MO(231,54.7%)或CA护理(191,45.2%)。MOs的脊柱麻醉失败率(7,3.0%)不劣于CA(5,2.6%);成功率差异为0.4%(95%CI=0.36-0.43%;p=0.80)。此外,术中或术后并发症两组间无统计学差异,或患者在手术过程中经历疼痛。
    结论:这项研究表明,在低风险手术患者中,经过培训的MO提供的脊髓麻醉护理的失败率不劣于CA提供的护理。这可能支持将任务共享作为扩大印度农村医院麻醉护理能力的一种手段的政策措施。
    背景:NCT04438811。
    BACKGROUND: Task-sharing of spinal anaesthesia care by non-specialist graduate physicians, termed medical officers (MOs), is commonly practised in rural Indian healthcare facilities to mitigate workforce constraints. We sought to assess whether spinal anaesthesia failure rates of MOs were non-inferior to those of consultant anaesthesiologists (CA) following a standardised educational curriculum.
    METHODS: We performed a randomised, non-inferiority trial in three rural hospitals in Tamil Nadu and Chhattisgarh, India. Patients aged over 18 years with low perioperative risk (ASA I & II) were randomised to receive MO or CA care. Prior to the trial, MOs underwent task-based anaesthesia training, inclusive of remotely accessed lectures, simulation-based training and directly observed anaesthetic procedures and intraoperative care. The primary outcome measure was spinal anaesthesia failure with a non-inferiority margin of 5%. Secondary outcome measures consisted of incidence of perioperative and postoperative complications.
    RESULTS: Between 12 July 2019 and 8 June 2020, a total of 422 patients undergoing surgical procedures amenable to spinal anaesthesia care were randomised to receive either MO (231, 54.7%) or CA care (191, 45.2%). Spinal anaesthesia failure rate for MOs (7, 3.0%) was non-inferior to those of CA (5, 2.6%); difference in success rate of 0.4% (95% CI=0.36-0.43%; p=0.80). Additionally, there were no statistically significant differences observed between the two groups for intraoperative or postoperative complications, or patients\' experience of pain during the procedure.
    CONCLUSIONS: This study demonstrates that failure rates of spinal anaesthesia care provided by trained MOs are non-inferior to care provided by CAs in low-risk surgical patients. This may support policy measures that use task-sharing as a means of expanding anaesthesia care capacity in rural Indian hospitals.
    BACKGROUND: NCT04438811.
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  • 文章类型: Journal Article
    对医疗机构提供堕胎和堕胎后护理的能力进行常规评估,可以为扩大准入和提高质量的政策和方案提供信息。自2018年以来,堕胎和/或堕胎后护理已被纳入两个世卫组织卫生机构评估工具:服务可用性和就绪性评估和协调卫生机构评估。我们讨论了通过将堕胎整合到这些标准化工具中的经验吸取的教训。我们的经验强调了在一系列法律背景下将堕胎纳入医疗机构评估的可行性。促进堕胎融合的因素包括跨国合作和经验分享,及时输入工具适应性,明确的领导,在评估协调小组中,关键利益相关者之间的密切关系,使用当地适当的术语来指代堕胎和参考国家政策和准则。为了促进高质量的数据收集,我们确定了在工具设计中围绕问题排序的考虑因素,适当的术语,以及平衡堕胎正常化与数据收集者足够的敏感性和教育的必要性。为了促进适当和一致的分析,未来的工作必须确保对推荐和不推荐的堕胎方法进行充分分类,与国家指导方针保持一致,并制定了衡量堕胎服务准备情况的标准化方法。测量堕胎服务的可用性和准备情况应成为常规做法,也是医疗机构评估工具的标准化组成部分。包括堕胎监测在内的卫生机构评估产生的证据可以指导努力扩大获得及时有效护理的机会,并帮助将堕胎作为性和生殖保健的核心组成部分正常化。
    Routine assessment of health facility capacity to provide abortion and post-abortion care can inform policy and programmes to expand access and improve quality. Since 2018, abortion and/or post-abortion care have been integrated into two WHO health facility assessment tools: the Service Availability and Readiness Assessment and the Harmonised Health Facility Assessment. We discuss lessons learnt through experiences integrating abortion into these standardised tools. Our experiences highlight the feasibility of including abortion in health facility assessments across a range of legal contexts. Factors facilitating the integration of abortion include cross-country collaboration and experience sharing, timely inputs into tool adaptations, clear leadership, close relationships among key stakeholders as in assessment coordination groups, use of locally appropriate terminology to refer to abortion and reference to national policies and guidelines. To facilitate high-quality data collection, we identify considerations around question sequencing in tool design, appropriate terminology and the need to balance the normalisation of abortion with adequate sensitisation and education of data collectors. To facilitate appropriate and consistent analysis, future work must ensure adequate disaggregation of recommended and non-recommended abortion methods, alignment with national guidelines and development of a standardised approach for measuring abortion service readiness. Measurement of abortion service availability and readiness should be a routine practice and a standardised component of health facility assessment tools. Evidence generated by health facility assessments that include abortion monitoring can guide efforts to expand access to timely and effective care and help normalise abortion as a core component of sexual and reproductive healthcare.
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  • 文章类型: Journal Article
    卫生紧急情况,包括流行病,不是新的事件;一些值得注意的事件发生在过去。然而,COVID-19大流行的规模是前所未有的。COVID-19大流行暴露了国家卫生系统在有效管理突发卫生事件方面的准备不足。大流行期间,控制病毒的传播和进入大流行后时代的希望依赖于研究来改善病人护理和为政府政策提供信息。尽管如此,在资源匮乏的环境中,在突发卫生事件期间的研究实施可能具有挑战性。本文介绍了经验轶事,并提供了有关在卫生紧急情况下支持研究的方式的见解。我们实施了一项纵向研究,调查COVID-19大流行的影响,包括SARS-CoV-2感染,怀孕期间对母婴健康的影响。该研究利用医院数据库招募怀孕期间未感染SARS-CoV-2的女性。然后对感染和未感染组的母婴对进行纵向随访3年。观察,包括规划中的挑战,记录检索,跟踪,招募,对符合条件的妇女采取后续行动,由研究人员报告。观察到的挑战分为三个总体主题:(a)个体因素,(b)卫生系统挑战,和(c)研究业务挑战。一些值得注意的观察包括错误信息,误解,不信任,不发达的健康记录系统,污名,和犹豫。早期规划,有效沟通,和社区意识可以帮助实施一个成功的研究项目。此外,努力改善卫生从业人员之间的合作和共同创造,研究人员,在卫生紧急情况下,公众可能会受益于研究项目的实施。
    Health emergencies, including pandemics, are not new occurrences; some notable ones occurred in the past. However, the scale of the COVID-19 pandemic is unprecedented. The COVID-19 pandemic exposed the unpreparedness of national health systems in effectively managing health emergencies. During the pandemic, controlling the spread of the virus and hopes of exiting into a post-pandemic era were reliant on research to improve patient care and inform government policies. Nonetheless, research implementation during health emergencies can be challenging in low-resourced settings. This paper presents anecdotes of experiences and offers insight into ways research can be supported during health emergencies. We implemented a longitudinal study to investigate the impact of the COVID-19 pandemic, including SARS-CoV-2 infection, during pregnancy on maternal and child health outcomes. The study utilized hospital databases to recruit women who were infected and with no known SARS-CoV-2 infection during pregnancy. Mother-infant pairs in the infected and uninfected group were then followed longitudinally for 3 years. Observations, including challenges during planning, record retrieval, tracking, recruitment, and follow-up of eligible women, were reported by research staff. The challenges observed were group into three overarching themes: (a) individual factors, (b) health system challenges, and (c) research operational challenges. Some notable observations include misinformation, misconception, mistrust, underdeveloped health record systems, stigma, and hesitance. Early planning, effective communication, and community awareness can help in implementing a successful research project. Additionally, efforts to improve collaboration and co-creation between health practitioners, researchers, and the public may benefit the implementation of research projects during a health emergency.
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  • 文章类型: Journal Article
    尼日利亚的专利和专有药品供应商在提供初级保健服务方面发挥着非常不可或缺的作用,是穷人的重要护理来源。它们位于社区附近,通常是卫生和计划生育(FP)产品和儿童疾病治疗的第一护理来源。自2017年以来,尼日利亚药房委员会(PCN)通过IntegratE项目与家庭健康协会合作,以解决专利和专有药品供应商(PPMV)服务质量差的问题,并通过试点三层认证系统重新定位以提供更好的服务。这种伙伴关系为卫生人力资源带来了创新,考虑到他们情况的特殊性,制定了新的方法和安排,以在集水区的不同地理位置向PPMV提供培训。在这项研究中,我们旨在讨论专利和成药供应商在提供高质量健康服务方面的作用,并提供通过IntegratE项目从尼日利亚PPMV培训设施试点规模中获得的重要经验教训和建议.从吸取的教训中,我们建议,为了成功扩大PPMV三级认证的实施,PCN必须建立一个认证预算项目。此外,政府还应考虑通过基本医疗保健基金支持这项培训,以此作为加强初级医疗保健一级人力资源的一种方式。其他替代资金来源包括许可和注册费以及PCN内部产生的其他会费。
    Patent and proprietary medicine vendors in Nigeria play a very integral role in providing primary health care services and are an important source of care for the poor. They are located close to communities and are often the first source of care for hygiene and family planning (FP) products and treatment of child illnesses. Since 2017, Pharmacy Council of Nigeria (PCN) has partnered with Society for Family Health through the IntegratE project to address the poor quality of services by patent and proprietary medicine vendors (PPMVs) and reposition them for better service delivery through piloting the three-tier accreditation system. The partnership has engendered innovation for human resource for health, and considering the peculiarity of their situation, new emerging methods and arrangements to deliver the training to PPMVs in diverse geographical locations within their catchment areas are developed. In this study, we aimed to discuss the role of patent and proprietary medicine vendors in the provision of quality health delivery and provide key lessons and recommendations which have been learned from the pilot scaling of training facilities for PPMVs in Nigeria through the IntegratE project. From the lessons learnt, we propose that, for a successful scale-up of implementation of the three-tier accreditation of PPMVs, PCN will have to establish a budget line for accreditation. In addition, the government should also consider supporting this training through the Basic Healthcare Provision Fund as a way of strengthening human resources at the primary healthcare level. Other alternative sources of funding include licensing and registration fees and other dues generated internally by PCN.
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  • 文章类型: Journal Article
    背景:随着全球旷日持久的难民危机的增加,必须确保在流离失所环境中建立强大的国家卫生信息系统(HIS),其中包括对难民敏感的数据和按难民身份分类。这项多国研究旨在评估难民健康数据与约旦国家HIS的整合程度,黎巴嫩,在收集和报告与难民有关的健康指标方面,确定其国家HIS的优势和劣势。
    方法:本研究采用比较国家分析方法,采用三阶段框架。第一阶段涉及审查全球卫生组织编制的4120项指标,接下来是多阶段的细化过程,导致45个指标分布在五个主题上。第二阶段包括从文献中选择相关标准,包括数据源,年度报告,按难民身份分类,难民人口调整,准确度,和一致性。第三阶段涉及根据这些标准评估数据可用性和选定指标的质量。
    结果:我们的分析揭示了评估约旦难民健康状况的重大挑战,黎巴嫩,乌干达,主要源于现有健康数据和指标的限制。具体来说,我们发现了重大问题,包括依赖国际数据源的不完整的本地数据收集,从不同实体收集的零散数据导致差异,在大多数指标上,难民和收容人口之间缺乏区别。这些限制阻碍了准确的比较和分析。根据这些发现,提出了一系列可行的建议,以指导这三个国家的政策制定者改善将难民健康数据整合到其国家HIS中,最终提高难民的福祉和获得医疗保健服务的机会。
    结论:约旦难民相关健康数据的现状,黎巴嫩,乌干达表示需要改进数据收集和报告做法,按难民身份进行分类,并将难民健康数据更好地纳入国家HIS,以了解东道国难民的健康状况和需求。关键的改进策略包括建立一个集中的机构,以实现一致和高效的数据管理,促进透明和包容性的数据治理,加强劳动力能力,以有效管理难民健康数据。
    BACKGROUND: With the increasing number of protracted refugee crises globally, it is essential to ensure strong national health information systems (HIS) in displacement settings that include refugee-sensitive data and disaggregation by refugee status. This multi-country study aims to assess the degree of integration of refugee health data into national HIS in Jordan, Lebanon, and Uganda and identify the strengths and weaknesses of their national HIS in terms of collecting and reporting on refugee-related health indicators.
    METHODS: The study employs a comparative country analysis approach using a three-phase framework. The first phase involved reviewing 4120 indicators compiled from global health organizations, followed by a multi-stage refinement process, resulting in 45 indicators distributed across five themes. The second phase consisted of selecting relevant criteria from the literature, including data sources, annual reporting, disaggregation by refugee status, refugee population adjustments, accuracy, and consistency. The third phase involved assessing data availability and quality of the selected indicators against these criteria.
    RESULTS: Our analysis uncovered significant challenges in assessing the health status of refugees in Jordan, Lebanon, and Uganda, primarily stemming from limitations in the available health data and indicators. Specifically, we identified significant issues including incomplete local data collection with reliance on international data sources, fragmented data collection from various entities leading to discrepancies, and a lack of distinction between refugees and host populations in most indicators. These limitations hinder accurate comparisons and analyses. In light of these findings, a set of actionable recommendations was proposed to guide policymakers in the three countries to improve the integration of refugee health data into their national HIS ultimately enhancing refugees\' well-being and access to healthcare services.
    CONCLUSIONS: The current status of refugee-related health data in Jordan, Lebanon, and Uganda indicates the need for improved data collection and reporting practices, disaggregation by refugee status and better integration of refugee health data into national HIS to capture the health status and needs of refugees in host countries. Key improvement strategies include establishing a centralized authority for consistent and efficient data management, fostering transparent and inclusive data governance, and strengthening workforce capacity to manage refugee health data effectively.
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  • 文章类型: Journal Article
    可信的互动在卫生系统中至关重要。信任通过鼓励患者寻求并坚持治疗来促进有效的医疗保健,促进卫生专业人员之间的团队合作,减少误解和医疗错误,培养创新和韧性。新冠肺炎疫情强调了信任的重要性,强调建立和维护它的挑战,尤其是在危机期间,对当局和卫生系统的信任对合规和安全至关重要。然而,信任是复杂的,随着背景和经验的不同,并且是动态的,很容易失去,但很难恢复。尽管它很重要,信任在卫生政策中经常被忽视,难以衡量。卫生系统和决策者必须认识到信任的重要性,有效地测量它,了解它是如何建造或侵蚀的,并采取行动维护和恢复它。这包括承认边缘化群体的过去经历,让社区参与决策,并确保卫生实践和政策的透明度和完整性。
    Trusted interactions are crucial in health systems. Trust facilitates effective healthcare by encouraging patients to seek and adhere to treatment, enabling teamwork among health professionals, reducing miscommunication and medical errors, and fostering innovation and resilience. The COVID-19 pandemic underscored the importance of trust, highlighting the challenges in establishing and maintaining it, especially during crises when trust in authorities and health systems is vital for compliance and safety. However, trust is complex, varying with context and experiences, and is dynamic, easily lost but hard to regain. Despite its importance, trust is often overlooked in health policy and difficult to measure. Health systems and policy-makers must recognize the importance of trust, measure it effectively, understand how it is built or eroded, and act to maintain and restore it. This involves acknowledging the past experiences of marginalized groups, involving communities in decision-making, and ensuring transparency and integrity in health practices and policies.
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  • 文章类型: Journal Article
    背景:很少有低收入或中等收入国家(LMICs)优先考虑扩大康复服务。现有的奖学金已经确定了这个问题的定义,治理,和结构因素对康复的优先次序有影响。这项研究的目的是确定影响乌干达康复服务优先次序和实施的因素。
    方法:采用案例研究设计。国家卫生系统康复优先框架指导了这项研究。数据来源包括与政府和非政府利益攸关方的33次关键线人访谈(KIIs),以及关于乌干达康复的同行评审和灰色文献。对数据进行了专题内容分析和概念图分析。
    结果:在乌干达,康复是一个没有资金支持的优先事项,获得政治关注,但未能获得足够的财政或人力资源分配。康复作为一项社会计划的国家遗产,而不是健康计划,影响了其目前的优先次序轨迹。其中包括零散的治理体系,一个软弱的宣传联盟,没有一个统一的目标或冠军,以及缺乏与现有卫生系统结构的整合,这使得扩大服务提供具有挑战性。我们的发现强调了结构,治理,以及关于优先次序的框架因素以及历史背景在理解优先次序和实施方面的重要性。
    结论:我们的研究结果表明,康复等多部门卫生领域。在乌干达的政策议程中提高康复的战略考虑包括生成可靠的指标,以量化人口需求的性质和程度,并将政府和非政府行为者团结在一起,共同实现康复的扩展。我们提供了加强康复的机会,无论是在乌干达还是在类似的情况下,都在努力应对许多卫生部门的优先事项和有限的资源。
    BACKGROUND: Few low- or middle-income countries (LMICs) have prioritized the expansion of rehabilitation services. Existing scholarship has identified that problem definition, governance, and structural factors are influential in the prioritization of rehabilitation. The objective of this study was to identify the factors influencing the prioritization and implementation of rehabilitation services in Uganda.
    METHODS: A case study design was utilized. The Prioritization of Rehabilitation in National Health Systems framework guided the study. Data sources included 33 key informant interviews (KIIs) with governmental and non-governmental stakeholders and peer-reviewed and grey literature on rehabilitation in Uganda. A thematic content analysis and concept map were conducted to analyze the data.
    RESULTS: Rehabilitation is an unfunded priority in Uganda, garnering political attention but failing to receive adequate financial or human resource allocation. The national legacy of rehabilitation as a social program, instead of a health program, has influenced its present-day prioritization trajectory. These include a fragmented governance system, a weak advocacy coalition without a unified objective or champion, and a lack of integration into existing health systems structures that makes it challenging to scale-up service provision. Our findings highlight the interactive influences of structural, governance, and framing factors on prioritization and the importance of historical context in understanding both prioritization and implementation.
    CONCLUSIONS: Our findings demonstrate challenges in prioritizing emerging, multi-sectoral health areas like rehabilitation. Strategic considerations for elevating rehabilitation on Uganda\'s policy agenda include generating credible indicators to quantify the nature and extent of the population\'s need and uniting governmental and non-governmental actors around a common vision for rehabilitation\'s expansion. We present opportunities for strengthening rehabilitation, both in Uganda and in similar contexts grappling with many health sector priorities and limited resources.
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    背景:全民健康覆盖(UHC)是为卫生(DAH)和DAH受援国政府提供发展援助的实体之间广泛接受的目标。评估UHC进展的一个关键指标是金融风险保护,但关于DAH与金融风险保护(以及UHC)相关程度的经验证据很少。
    方法:我们的样本包括65个国家,这些国家的人均DAH高于所有国家的人口加权平均人均DAH。样本包括170万个家庭观察,2000-2016年期间。我们运行国家和年份固定效应回归,和伪面板模型,评估DAH与三项财务风险保护措施之间的关联:灾难性卫生支出(即,自付医疗支出超过家庭总支出的10%[\'CHE10%\']),自付医疗支出占总支出的比例(“OOP%”),以及医疗支出导致的贫困,在每天1.90美元的贫困线(“IMP190”)。
    结果:平均,DAH投资似乎与金融风险保护结果没有显着关联。然而,我们发现暗示性证据表明,人均DAH增加1美元是负相关的(即,改进)对国家内最贫穷的五分之一家庭至少有一个金融风险保护结果(在固定效应模型中,IMP190:0.05个百分点,p<0.1;在伪面板模型中,CHE10%:0.12个百分点,p<0.01)。DAH也是负相关的(即,一种改进),当它主要通过政府系统引导时,大多数金融风险保护结果(即,当它是“预算内”时)(10%:0.68个百分点,p<0.05)。一些健壮性检查证实了这些结果。
    结论:DAH投资需要仔细规划,以提高金融风险保护。例如,DAH对最贫穷的五分之一人口的积极影响可能是由于DAH针对较贫穷的人口并有效地做到了这一点。我们的结果还表明,通过政府提供更多资源可能是增强DAH对金融风险保护影响的有希望的途径。
    BACKGROUND: Universal Health Coverage (UHC) is a widely accepted objective among entities providing development assistance for health (DAH) and DAH recipient governments. One key metric to assess progress with UHC is financial risk protection, but empirical evidence on the extent to which DAH is associated to financial risk protection (and hence UHC) is scarce.
    METHODS: Our sample is comprised of 65 countries whose DAH per capita is above the population -weighted average DAH per capita across all countries. The sample comprises of 1.7 million household observations, for the period 2000-2016. We run country and year fixed effects regressions, and pseudo-panel models, to assess the association between DAH and three measures of financial risk protection: catastrophic health expenditure (i.e., out-of-pocket health expenditures larger than 10% of total household expenditures [\'CHE10%\']), out-of-pocket health expenditure as a share of total expenditure (\'OOP%\'), and impoverishment due to health expenditures, at the 1.90US$ per day poverty line (\'IMP190\').
    RESULTS: on average, DAH investment does not appear to be significantly associated with financial risk protection outcomes. However, we find suggestive evidence that a 1 US$ increase in DAH per capita is negatively associated (i.e., an improvement) with at least one financial risk protection outcome for the poorest household quintile within countries (in fixed effects models, IMP190: 0.05 percentage points, p < 0.1; in pseudo-panel models, CHE10%: 0.12 percentage points, p < 0.01). DAH is also negatively associated (i.e., an improvement) with most financial risk protection outcomes when it is largely channelled via government systems (i.e., when it is \"on-budget\") (CHE10%: 0.68 percentage points, p < 0.05). Several robustness checks confirm these results.
    CONCLUSIONS: DAH investments require careful planning to improve financial risk protection. For example, positive DAH effects for the poorest quintiles of the population might be driven by DAH targeting poorer populations and doing so effectively. Our results also suggest that channelling more resources via governments might be a promising avenue to enhance the impact of DAH on financial risk protection.
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  • 文章类型: Journal Article
    病人旅程图,一种新颖的方法来可视化患者可能与卫生系统的所有相互作用,越来越多地被医疗保健行业采用,以识别患者面临的挑战,以改善健康结果为目标。然而,患者旅程地图通常在制药公司内部使用,并没有广泛发布。这里,我对8名患有慢性和/或严重疾病的印度患者/护理人员进行了深入访谈;其中7名受访者居住在印度,完全从印度卫生系统的角度出发,而1从他在印度生活的经历中谈到,爱尔兰,和英国。利用这些采访的见解,根据我作为一个患有罕见疾病和多种合并症的病人的经验,并寻求一些国际患者倡导者和行业专业人士的反馈,我构建了一张详细的地图,将严重/慢性病患者的集体旅程可视化。除了显示病人旅程的不同阶段,地图可视化了相关的压力水平,痛点(导致负面体验的问题),情感,和信息寻求行为。出现的一个关键见解是,随着一系列高度可变的情绪患者体验,在整个患者旅程中,压力是一个一致的因素。在许多情况下,压力是由可以避免的因素引起或加剧的,比如漫长的等待时间,程序上的麻烦,不充分或不准确的信息,在与医疗保健专业人员的互动中缺乏同理心。患者所经历的挫折源于潜在的实际/有形和情感/理想需求的混合。我已经详细讨论了这些需求,并提供了可以在卫生系统中实施的变革建议,以更好地满足这些需求。虽然我在这里介绍的分析通常是从印度卫生系统的背景出发的,讨论的一些观点可能在其他卫生系统中存在细微差别,提供的主题和见解与所有患者及其旅程相关,在世界任何地方。制药行业的专业人士,医疗保健提供者,政策制定者可能会从这些见解中受益,并可能将其应用于做出战略决策和改变其方法,以改善全球患者体验和健康结果为目标。
    Patient journey mapping, a novel method to visualize all the interactions a patient might have with the health system, is increasingly being adopted by the healthcare industry to identify challenges patients face, with the goal of improving health outcomes. However, patient journey maps are often used internally within pharma companies and are not published widely. Here, I conducted in-depth interviews with eight Indian patients/caregivers dealing with chronic and/or serious conditions; seven of the interviewees were living in India and spoke entirely from the perspective of the Indian health system, whereas one spoke from his experience of living in India, Ireland, and the UK. Using insights from these interviews, drawing on my own experience as a patient living with a rare disease and multiple comorbidities, and seeking feedback from several international patient advocates and industry professionals, I constructed a detailed map visualizing the collective journey of patients with serious/chronic conditions. Apart from showing the different stages in the patient journey, the map visualizes the associated stress levels, pain points (issues leading to a negative experience), emotions, and information-seeking behavior. One key insight that emerges is that along with a range of highly variable emotions patients experience, stress is a consistent factor throughout the patient journey. In many cases, the stress is caused or exacerbated by factors that can be avoided, such as long wait times, procedural hassles, inadequate or inaccurate information, and lack of empathy in interactions with healthcare professionals. The frustrations patients experience stem from a mix of underlying practical/tangible and emotional/aspirational needs. I have discussed these needs at length and provided suggestions for changes that could be implemented in the health system to meet these needs better. While my analysis presented here is generally framed from the context of the Indian health system, and some points discussed might have nuances in other health systems, the themes and insights provided are relevant to all patients and their journey, anywhere in the world. Pharmaceutical industry professionals, healthcare providers, and policymakers may benefit from these insights and may apply them to make strategic decisions and changes in their approach, with the goal of improving patient experience and health outcomes globally.
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