The African Health Information Exchange Network: transforming chronic disease care

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.

Impact goal: To broaden and strengthen a network of academic, technical, industry and service partners that will build on formative digital health interventions to provide tools and models of care that will transform the quality of clinical care provision for patients with chronic diseases.

To achieve this goal, we will:

- Work with implementation sites to support evolving models for managing the digital safety net and supporting patient self-management.

- Extend the existing African Health Information Exchange (AHIE) architecture and build on emerging systems to optimize patient-facing and provider-facing tools for chronic disease care.

- Work with patients and patient-advocacy groups to ensure that protection of digital rights and appropriate information governance are central to the design of all technology developments.

- Apply data science and machine learning tools to support public health intelligence and clinical decision support.

- Rigorously evaluate the uptake and impact of the technologies provided by the project as well as the broader ecosystems being matured.

This work will have a positive impact for a range of stakeholders in the short, medium and long-term:

- Patients will be able to manage their own health conditions and better navigate the health system, accessing new services and information. Vulnerable patients who require intervention will be identified and contactable. Patients will benefit from improved continuity-of-care.

- Clinicians will be able to deliver better clinical care through improved information availability, alerting and decision support.

- Service managers will benefit from improved health intelligence support through the digitization and consolidation of administrative and clinical data.

- Industry will have access to the knowledge generated and best practice use cases to improve their offerings in the digital health sector, sustainable domestic digital health solutions to interface, and will be able to explore business models built on support of open-source software.

- Community health workers will be supported in their work as part of the non-clinical ecosystem and patient safety net.

- Policy makers in ministries of health will be supported through improved information availability and data analytics, and the outputs of the evaluation of the stage 2 intervention.