In many developing countries, information and communication technology (ICT) leaders are working to implement universal health coverage (UHC). They are grappling with the fact that although their insurance information systems are just now being formed, there are often underlying legacy health information systems that have been used to collect data for managing health care service delivery quality and that have provided important clues to emerging health issues (e.g., the rising incidence of noncommunicable diseases). Similarly, national electronic health (eHealth) leaders at ministries of health struggle with how to link disparate information systems and harmonize many primary care projects that are often funded outside of the official health system—projects that collect data in slightly different ways, each in different information systems.
In our work over the past few years as technical facilitators for the Information Technology (IT) Initiative of the Joint Learning Network (JLN) for Universal Health Coverage, we have been struck by several things. First, the payor or insurer and the ministry of health rarely have opportunities to coordinate efforts, particularly in the area of health information systems. Second, they are often building similar if not almost duplicative systems (e.g., facility and provider registries). And third, although both groups are deeply interested in using standards (i.e., code sets, communication formats) to drive interoperability, they often struggle with how to get started. Despite these challenges, we also have seen first-hand the success and efficiency gains in quality of care and reduced medical costs that some countries (e.g., Abu Dhabi, Canada) have achieved when aggressively using standards.
If taking a standards-based approach is so great, why has it not been more widely touted or adopted? Factors inhibiting adoption include:
- Standards debates are often not well understood.
- These debates are not supported financially or politically.
- Choosing standards is difficult without a lot of personnel, expertise, and money, which most health systems do not possess.
Recognizing these challenges and at the request of our JLN IT Initiative collaborative members, we have developed this eBook as a reference guide for countries interested in linking their UHC and eHealth information systems using a standards-based approach. The eBook provides a set of specific actionable steps and links to resources that a country can leverage to develop a national eHealth standards framework (NeSF). The development of national-scale infrastructure based on the NeSF can, and should, be done over time. The pieces do not all need to be put in place at once; rather, they can be brought together as national needs and systems evolve. Standards-based systems will be interoperable, regardless of the underlying technology, as long as there is agreement regarding content, coding, and communication formats. This opens up opportunities; new interfaces can enable the use of existing investments.
A growing number of resources are available on the topic of standards and interoperability. These include published national eHealth standards frameworks (from both developed and developing countries) and published and in-press guidance documents from international organizations such as the World Health Organization (WHO), International Telecommunication Union (ITU), and World Bank. Here we collect relevant references and additional resources, which are cited where appropriate and listed at the back of the eBook. We extend some of the existing work to provide specific context with a UHC perspective. We also document anecdotal, real-world perspectives from a select group of eHealth experts who have shared lessons learned from their countries’ eHealth and UHC journeys.
We believe that national eHealth architecture and the underlying standards decisions must be driven by the interests of each country and its citizens, and those national-level policymakers are in the best position to make those decisions. This eBook does not recommend which standards should be used or which IT systems should be implemented. Our goal is simply to unpack some of the complexities in the standards discussion and provide a way in which countries can practically use this information to start a standards-based information systems journey grounded in examples from countries already on this path.
We thank our interviewees [Mr. Cees Hesp (Netherlands), Dr. Alvin Marcelo (Philippines), Dr. Rosemary Foster (South Africa), Mr. Ramiro Guerrero (Colombia), and Dr. Boonchai Kijsanayotin (Thailand)] and our sidebar authors [Ms. Anne Belford (Telus Health Systems, Canada) and Dr. Somil Nagpal (World Bank, India)], who contributed their experiences to this eBook. This eBook was produced with the generous support of the Rockefeller Foundation as part of the Joint Learning Network for Universal Health Coverage.