Measuring what matters – information systems for management of chronic disease in primary healthcare settings in low and middle-income countries: challenges and opportunities

Effective health information systems are essential to the delivery of high-quality community-based care for chronic disease which will be needed to address the changing healthcare needs of populations in low and middle-income country settings. Health management information systems (health service data collected at facility level) and electronic health records (data organised by individual patients) may support the measurement-based, collaborative approach that is central to the chronic care model, which has been adopted as the basis for task-shared models of care for mental health and non-communicable disease. We used the performance of routine information systems management to guide our commentary on the evidence-base about information systems to support chronic care. We found that, despite an appetite for using the information to support decision-making around service planning, this rarely happens in practice, reasons include that data is not perceived to be of good quality or fit for purpose. There is often a mismatch between technology design and the availability of specialised knowledge and infrastructure. However, when data collection is designed in collaboration with local stakeholders, there is some evidence of success, demonstrated by completion and accuracy of data forms. Whilst there are global targets for the development of health information systems and progress on these is undoubtedly being made, indicators for chronic disease are seldom prioritised by national governments and there is insufficient decentralisation to facilitate local data-driven decision-making. Our recommendations for future research and development, therefore, focus upon the need to integrate context into the design of information systems: through building strong multisectoral partnerships, ensuring newly developed indicators are well aligned to service models and using technology that is a good fit with local infrastructure. This approach will be necessary if information systems are to deliver on their potential to drive improvements in care for chronic disease.