We need to fix patient data gap to cope with the rise of “rich” diseases in Africa

When it comes to killer diseases in Africa, many people think of infectious diseases like tuberculosis, malaria, or even Ebola. But the reality is that diseases like cancer, diabetes and heart disease – known as non-communicable diseases (NCDs)—are a major threat. It’s estimated that there will be about 3.9 million deaths from these diseases in Africa by 2020. The rising burden will have an impact not only on people’s health. It will also affect economic productivity and the social fabric of societies. This is why there’s been an increasing focus on NCDs – they’re been included in the Sustainable Development Goals and will be the focus of the upcoming World Health Assembly. But African policymakers can only make headway if the performance of health systems is measured. This is particularly true given the limited resources they have. This would help them come up with more effective and efficient health interventions, which in turn will enable them to plan better and work faster to save more lives. The efficacy of health systems has traditionally been measured on the basis of access to services – counting the number of people who visit facilities. This information has also typically been geared towards care for short-lived conditions such as malaria or diarrhoea. But NCD’s need a different approach. The health landscape must evolve to take into account their rising prominence and the fact that their effects are long-lasting and more expensive to treat. Service quality Picture, for instance, a 42-year-old woman in a village in Botswana who was diagnosed with diabetes a year ago. She has been visiting a local clinic once a month for check-ups yet her blood sugar remains high. Despite her regular visits no one has examined her feet to check for ulcers or infections that might put her at risk of amputation. And she was not put on appropriate blood pressure medicine even though it’s available at the facility. Even though she has logged over 12 visits, her disease is not being controlled. Her example illustrates that she – and millions like are – don’t just need access to health services. Other components, such as quality and efficiency, matter too. What’s more is that there’s no information about these gaps in the system. No data on the quality of services reaches health care providers, facility managers and policymakers. If it did, it might shed light on what can be done to improve healthcare. For example, training efforts could be extended to include foot examination techniques or how to ramp up medicine doses safely. Data could also help identify patients whose disease is controlled and can have their visits more spread out. This would shorten waiting time in queues for sicker patients and free up time for health care providers to focus on other duties like patient group education and documentation. Yet, health system information in general is lacking in developing countries, including many in sub-Saharan Africa. Even basic systems to record vital events – such as births and deaths – are incomplete. More than a third of the world’s 128 million births a year, and two-thirds of its 57 million deaths, are not registered. The shortage of databases is acute. For example, there are only 25 cancer registries that track cancer cases. These only cover 18 out of 52 countries. This is one of the reasons why the World Health Organisation estimates that only one in five low and middle-income countries have the necessary data to guide cancer policy and planning. What needs to be done Measuring the performance of health systems in their entirety must be prioritized. The burden of disease may be known but what is the health system doing about it? People are able to get care, but is the care making a difference? If not, what can be changed? Making this information available is no small task. African health systems are already under strain. Long patient lines and busy clinics hinder detailed documentation. Interruptions in electricity and internet connectivity challenge reliable electronic record keeping. People managing health information systems also have limited technical capacity. But the process need not be so cumbersome. First, sets of core information that have the greatest potential to improve policies in hospitals and clinics must be identified. An example is recording the stage of a cancer at diagnosis and completion of treatment. Health authorities would need to standardise and make routine reporting of these throughout the country. This is what contributed to Rwanda’s unprecedented health sector performance. The country slashed under-5 child mortality by over two-thirds, maternal mortality by more than half and HIV mortality by more than half between 2000 and 2015. It also played a part in treating tuberculosis in Malawi and HIV in Kenya and Nigeria. Although these aren’t non-communicable diseases, lessons can be learnt. Data collection can be improved by engaging doctors and nurses at the front lines of care. This has been done at the Butaro Cancer Centre of Excellence in Rwanda where the electronic medical records system was designed to facilitate clinical management of patients. At the same time it supported programme monitoring and evaluation and took into account existing limitations in skilled personnel and internet connectivity given the rural setting. Keeping data in its electronic form is ideal. It will ultimately save time and can be designed to manage data across diseases – such as HIV – and events – such as deaths. This is not without its challenges in many African settings. But there are silver linings. Even with unreliable electricity and internet connections, many health information systems are already electronic and there’s a groundswell of mobile technology innovations that can be put to use. The time is now for Africa to count the things that matter to improve health and save more lives. The writer is an Instructor at Harvard Medical School Quartz

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We need to fix patient data gap to cope with the rise of “rich” diseases in Africa