The African Health Information Exchange Network: transforming chronic disease care

在大多数非洲环境中，人们对数字医疗解决方案的变革潜力充满热情，特别是考虑到移动的技术的可用性。新的数字卫生举措通常是零碎的，以单一问题为重点，对捐助者的特定垂直报告需求做出反应，并且不能与常规医疗保健信息系统进行良好的互操作或集成。接受长期慢性病护理的病人继续被要求经常前往负担过重的保健设施，他们往往在那里等待很长时间，得到的服务非常有限。这种频繁的访问安排之所以出现，是因为这往往是卫生服务部门核实病人是否得到照顾、提供药品和实验室或临床（如血压）监测的唯一机制。临床医生面临着关于他们的病人的不完整的信息，因为其他地方提供的护理细节并不容易获得，有时长达几十年的纸质记录维护不善，难以在短期咨询中消化。卫生系统的装备很差，无法应对那些失去护理、管理不佳或患有多种疾病且护理协调不力的患者，因此患者往往会失败。务实地应用互操作性原则（所有解决方案共享一个共同的唯一客户标识符），并与健康信息交换进行交互，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访问自己的健康数据赋予患者权力，并直接参与与政府健康档案和服务相关联的数字支持计划。实现这一目标需要与当地长期利益相关者建立伙伴关系，这些利益相关者从事支持公共部门卫生保健和数字卫生解决方案的业务，并且拥有超越卫生服务管理和捐助者供资周期变化的机构记忆。随着时间的推移，民间社会和政府之间的长期伙伴关系以及持续投资，有助于实现艾滋病毒和结核病服务的某种程度的数字化和互操作性，包括在目前提案的拟议实施地点，最初在南非。拟议的学术，技术和行业合作伙伴网络直接与医疗服务提供商合作，旨在将这些方法扩展和推广到所有慢性疾病，并利用直接与患者沟通的潜力。当这些面向患者的解决方案与功能性健康信息交换相结合时，这种潜力得到了最大化。目前，在非洲只有有限的司法管辖区可以做到这一点，但随着独特的健康标识符和健康信息交流得到更广泛的采用，很快就会有更多的司法管辖区上网。所需的技术是众所周知的-挑战是务实地优化这些技术，以支持在独特的卫生和技术背景下实现具体的卫生目标。在选定的实施背景下，网络和合作将与现有的规模化技术平台合作并进行调整：重点开发这些新的面向患者的界面，以直接支持自我管理和与卫生服务的互动;利用直接面向患者的数字接口以及所有卫生服务提供组件的互操作性和连通性，协助政府为患者提供医疗设施服务选项，如药品收集;确保有能力根据全系统数据的可用性，在病人失去护理时进行有效干预;智能地利用全系统数据，根据先进的数据科学技术和政府保健服务的相关数据能力，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.