The African Health Information Exchange Network: transforming chronic disease care

在大多数非洲环境中，人们对数字卫生解决方案的变革潜力充满热情，特别是考虑到移动技术的可用性。新的数字卫生行动往往是零敲碎打的，以单一问题为重点，对捐助者的特定垂直报告需求作出反应，并且不能与常规卫生保健信息系统进行互操作或很好地集成。接受长期慢性病治疗的病人仍然经常被要求前往负担过重的卫生设施，在那里他们往往要等待很长时间，得到的服务非常有限。出现这种频繁出诊安排的原因是，这往往是卫生服务机构核实患者是否在接受治疗、提供药物和实验室或临床（如血压）监测的唯一机制。由于其他地方提供的护理细节不易获得，临床医生面临着关于患者的不完整信息，并且有时跨越数十年的纸质记录保存不善，难以在短时间内消化。卫生系统设备不足，无法应对失去护理的患者，管理不善的患者，或患有多种疾病且护理协调不佳的患者，结果往往使患者失败。务实地应用互操作性原则，即所有解决方案共享一个共同的唯一客户标识符，并与卫生信息交换进行交互，需要长期投资和系统成熟。然而，这种方法具有巨大的变革潜力，特别是如果再加上通过获取自己的健康数据赋予患者权力，并直接加入与政府健康档案和服务相关联的数字支持方案。实现这一目标需要与当地长期利益攸关方建立伙伴关系，这些利益攸关方从事支持公共部门卫生保健和数字卫生解决方案的业务，并且具有超越卫生服务管理和捐助者供资周期变化的体制记忆。长期的持续投资以及民间社会和政府之间的长期伙伴关系有助于在一定程度上实现艾滋病毒和结核病服务的数字化和互操作性，包括在目前提案的拟议实施地点，首先在南非。拟议的由直接与卫生服务提供者合作的学术、技术和行业伙伴组成的网络，力求将这些方法推广到所有慢性病，并利用面向患者的数字解决方案带来的直接与患者沟通机会的潜力。当这些面向患者的解决方案与功能性健康信息交换集成时，这种潜力将得到最大化。目前在有限的非洲司法管辖区，这是可能的，但随着独特的健康标识符和健康交换得到更广泛的采用，更多的司法管辖区将很快上线。所需要的技术已得到充分了解——挑战在于切实优化这些技术，以便在独特的卫生和技术背景下支持具体的卫生目标。网络和协作将在选定的实施环境中与现有的规模化技术平台合作并加以调整，重点是开发这些面向患者的新界面，以直接支持自我管理和与卫生服务机构的互动；利用直接面向患者的数字接口以及所有保健服务提供部分的互操作性和连通性，协助政府向患者提供设施外服务选择，例如药物收集；确保有能力根据全系统数据的可用性，在患者失去护理时进行有效干预；并且，智能地利用全系统的数据，以尖端的数据科学技术和政府卫生服务的相关数据能力为基础，加强各级护理。

In most African settings, there is huge enthusiasm for the transformative potential of digital health solutions, especially given the availability of mobile technology. New digital health initiatives are frequently piecemeal, single-issue-focused, are responsive to select vertical reporting needs of donors, and do not interoperate or integrate well with routine health care information systems. Patients in long-term chronic care continue to be asked to visit over-burdened health facilities frequently, where they often experience long waiting times and receive very limited services. This frequent visit schedule occurs as this is often the only mechanism health services have of verifying that patients are in care, and of providing medicines and laboratory or clinical (e.g. blood pressure) monitoring. Clinicians are faced with incomplete information about their patients as details of care provided elsewhere are not readily available, and paper-based records sometimes spanning decades are poorly maintained and difficult to assimilate in short consultations. Health systems are poorly equipped to respond to patients who fall out of care, are being sub-optimally managed, or have multiple morbidities with poorly co-ordinated care, and as a result often fail patients.Pragmatically applying the principles of inter-operability where all solutions share a common unique client identifier, and interact with a health information exchange, requires long term investments and systems maturation. This approach however has immense transformative potential, especially if coupled with empowering patients through access to their own health data, and direct enrolment in digitally-supported programs which link to their government health profiles and services. Achieving this requires partnerships with local long-term stakeholders who are in the business of supporting public sector health care and digital health solutions, and who have the institutional memory to transcend changes in health service management and donor funding cycles. Sustained investments over time and long-term partnerships between civil society and government have helped to achieve some measure of digitization and interoperability for HIV and tuberculosis services, including in the proposed implementation sites for the currently proposal, initially in South Africa. The proposed network of academic, technical and industry partners who work directly with health service providers, seeks to extend and generalize these approaches to all chronic conditions, and to harness the potential of direct-to-patient communication opportunities which arise from patient-facing digital solutions. This potential is maximized when these patient-facing solutions integrate with a functional health information exchange. There are limited African jurisdictions where this is currently possible, but many more will come on-line soon as unique health identifiers and health exchanges become more widely adopted. The required technologies are well-understood - the challenge is pragmatically optimizing them in support of specific health objectives in unique health and technology contexts. Working with and adapting existing scaled technology platforms in the selected implementation contexts, the network and collaboration will: focus on developing these new patient-facing interfaces to directly support self-management and interaction with the health services; utilise direct-to-patient digital interfaces and the inter-operability and connectedness of all health service delivery components to assist government to provide patients with out-of-facility service options such as for medicine collection; ensure the ability to intervene efficiently when patients fall out of care, based on system-wide data availability; and, utilize system-wide data intelligently to enhance care at all levels based on cutting edge data-science techniques and associated data competence in government health services.