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满足弱势和受排斥人口需求的能力。因此，开发方法来可靠地了解卫生系统薄弱的人群中的死亡原因是拯救生命的重要战略。长期以来，登记医疗死亡原因被认为对公共卫生至关重要。尽管全球化程度不断提高，但在许多资源贫乏的国家，人口动态事件的普遍登记仍然缺乏，不确定的估计数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影响弱势群体的健康方面发挥着重要作用。即使有数据，对资源贫乏环境中死亡率的根本原因关注不够，考虑到这些因素，迫切需要改善关于边缘化人口的健康信息，并为边缘化人口提供公共卫生应对措施。这项研究将扩展一种称为口头尸检（VA）的方法。VA用于衡量大量死亡在卫生设施外或未经登记的人群的死亡水平和原因。这一发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化行动计划。我们将通过三个阶段的工作来做到这一点。- 首先，我们将通过将医疗原因信息与死亡情况（死亡时寻求和使用护理）数据相结合，改进死因分类方法。在保健服务资金不足、薄弱和分散的情况下，这些机构往往可以发挥关键作用。还将与当地卫生规划人员协商制定分类，以便实际使用。第二，我们将开发一种额外的方法，以了解当地社区对长期健康挑战的看法。这将使我们能够进一步了解社会、经济和卫生系统问题如何影响护理的可获得性、可及性、可接受性和质量。该方法还有助于促进健康方面的社会包容。- 在最后阶段，我们将与卫生系统的更高级别就该方法进行协商。这将有助于发展我们如何使用扩展的死因分类与社区知识相结合。这里的目的是探讨如何使用的方法可以在一个持续的时尚连接健康监测服务组织在一个包容性的过程。数据、贫穷和不平等以复杂的相互依存关系存在：穷人的健康数据少于富人，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、新的疾病负担迅速出现以及大量不同人群无法获得保健的情况下，需要采取创新办法，以人为本，将人口动态事件登记与保健系统联系起来。该方法采用了自下而上的哲学，与源头的人口数据相联系。从长远来看，预计这一方法将有助于在一个包容性进程中在人口一级提供更严格的卫生数据，通过更好的数据和更好的评价能力，影响可持续的卫生成果。这项工作将在南非农村一个成立20多年的研究中心进行。现有数据的范围和卫生研究方面的丰富经验使我们能够与合作伙伴一起制定一种方法，这些合作伙伴对人口中的所有人进行登记作出了更广泛的承诺。

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.