Verbal Autopsy with Participatory Action Research (VA-PAR): Developing a people-centred health systems research methodology

最近的估计表明，世界上三分之二的死亡没有记录。这种情况严重限制了卫生系统应对脆弱和被排斥人群需求的能力。因此，制定方法以可靠地了解卫生系统薄弱的人群中人们死亡的原因是拯救生命的重要战略。医学死因登记长期以来被认为对公共卫生至关重要。尽管日益全球化，但在许多资源贫乏的国家，仍然缺乏对生命事件的普遍登记，不确定的估计为政策和规划提供了不充分的基础。此外，社会不平等和社会背景在塑造弱势群体的健康方面发挥着重要作用。即使有了数据，对资源贫乏环境中死亡的根本原因也没有给予足够的重视。考虑到这些因素，迫切需要改善边缘化人群的健康信息，为公共卫生对策提供信息。拟议的研究将发展一种被称为口头尸检（VA）的既定方法的扩展。VA用于衡量大量在卫生设施外或未经登记死亡的人口的死亡水平和死亡原因。这一进展将有助于地方卫生系统评估自身的卫生状况，确定优先事项并制定积极的卫生变革行动计划。为此，我们将分三个阶段开展工作。-首先，我们将改进死因分类方法，将医疗原因信息与死亡情况（死亡时寻求和使用护理）数据结合起来。在卫生服务资金不足、薄弱和分散的环境中，这些服务往往可以发挥关键作用。还将与地方卫生规划人员协商制定分类，以便实际使用。第二，我们将制定另一种方法，就长期存在的卫生挑战征求当地社区的意见。这将使我们进一步了解社会、经济和卫生系统问题如何影响护理的可得性、可及性、可接受性和质量。这种方法还可能有助于促进卫生领域的社会包容。-在最后阶段，我们将与更高级别的卫生系统就该方法进行磋商。这将有助于发展我们如何结合社区知识使用扩展的死因分类。这里的目的是探索该方法如何能够在一个包容性的过程中，以一种持续的方式将健康监测与服务组织联系起来。这种做法鼓励可持续的健康成果。数据、贫穷和不平等以复杂的相互依存关系存在：关于穷人健康的数据比富人少，这就提出了关于物质贫穷和数据贫穷之间关系的重要问题。在卫生系统脆弱和资源不足的环境中，在新的疾病负担迅速出现的环境中，在大量不同的人群被排除在获得卫生保健之外的环境中，需要采用创新的方法，以以人为本的方式将生命事件的登记与卫生保健系统联系起来。该方法采用了一种自下而上的哲学，将人口数据与源头联系起来。从长期来看，预计该方法将有助于在包容性进程中获得更严格的人口健康数据，从而通过更好的数据和改进的评价能力影响可持续的健康成果。这项工作将在南非农村建立了20多年的一个研究中心进行。现有数据的范围和卫生研究方面丰富的经验使我们能够与对人口中所有个人进行登记作出更广泛承诺的伙伴一起制定一种方法。

Recent estimates suggest that two-thirds of the world's deaths pass unrecorded. This situation seriously limits the ability of health systems to respond to the needs of vulnerable and excluded populations. Developing methods to reliably understand why people die in populations with weak health systems is therefore an important strategy for saving lives. Registering medical cause of death has long been considered essential for public health. Despite increasing globalisation, in many resource-poor countries, universal registration of vital events remains lacking and uncertain estimates provide an inadequate basis for policy and planning. In addition, the social inequalities and social contexts play an important role in shaping health for disadvantaged groups. Even with the data available, insufficient attention is paid to the root causes of mortality in resource poor settings.Considering these factors, there is an urgent need to improve health information about and for marginalised populations to inform public health responses. The proposed research will develop an extension to an established method called Verbal Autopsy (VA). VA is used to measure the levels and causes of death in populations where large numbers die outside health facilities or without registration. The development will help local health systems to assess their own health situations, identify priorities and develop action plans for positive health change. We will do this through three phases of work. - Firstly, we will develop improved ways to classify causes of death by combing information on medical causes with data on the circumstances of deaths (seeking and using care at the time of death). In settings where health services are under-funded, weak and fragmented, these can often play a crucial role. The classifications will also be developed in consultation with local health planners to be of practical use.- Secondly, we will develop an additional method to gain the views of local communities on long-standing health challenges. This will allow us to further understand how social, economic and health systems issues influence availability, accessibility, acceptability, and quality of care. The method may also help foster social inclusion in health. - In the final phase, we will consult with higher levels of the health system about the method. This will help develop how we use the extended cause of death classifications combined with community knowledge. The aim here is to explore how the method could be used in an ongoing fashion to connect health surveillance to service organisation in an inclusive process. This approach encourages sustainable health gains.Data, poverty and inequality exist in complex co-dependency: less data exist on the health of the poor than the rich, raising important questions about the relationship between material and data poverty. In settings where health systems are fragile and under-resourced, where new burdens of disease are rapidly emerging, and where large and diverse populations are excluded from access to health care, innovative approaches that connect the registration of vital events to health care systems in a people-centred approach are needed. The approach employs a bottom up philosophy connecting with population data at source. In the longer term, it is envisaged that the method will contribute to more rigorous health data at population level in an inclusive process that can affect sustainable health gains through better data and improved capacity for evaluation. The work will be conducted in an research centre in rural South Africa established for over 20 years. The extent of data available and the richness of experience in health research allows us to develop a method with partners who enact a broader commitment to registration of all individuals within a population.