Gaps in the data: Building Mozambique’s first-ever medical registry

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“The research we develop is to inform the policy makers. We try to ask the questions that they are looking for answers to.”
Dr. Ana Olga Mocumbi, cardiologist
NCD Division, National Public Health Research Institute, Mozambique

Mozambique is a Portuguese-speaking country of 25 million people in East Africa, the majority of whom live on less than $1 per day. GDP per capita was $570 in 2012, and the country spent approximately 6.4 percent of GDP on health care that year. Like many low-income countries, Mozambique does not have the data needed to support strong evidence-based policy making for noncommunicable diseases and injuries. To address gaps in data on the NCD burden, Dr. Ana Olga Mocumbi, an NCD researcher in Mozambique, is spearheading the development of the country’s first medical registry for NCDs.

This registry will build off previous national surveys, including the WHO STEPwise approach to Surveillance (STEPS survey), which solely measured lifestyle-related risk factors, and will include an expanded list of diseases and risk factors in order to better understand the NCD burden among the very poor and inform national policy moving forward.

The bottom line

Dr. Mocumbi’s efforts to improve NCD data systems in Mozambique are an example of strong national leadership and a commitment to evidence-based approaches to NCD treatment. Better understanding the NCD burden and risk factor profile in low-resource settings will highlight the needs in Mozambique and support funding and policy prioritization.

Lessons learned

  • It is important to adapt international guidelines and recommendations to the specific national context. In Mozambique, chronic complications of infectious diseases are a major NCD concern. And while the epidemiological shift of urbanization and lifestyle risk factors emphasized by the World Health Organization (WHO) is happening in Mozambique’s cities, the epidemiology of NCDs in rural areas is very different. To be most useful, work on national risk factors and treatment must take into account differences between risk factors and epidemiology in urban, peri-urban, and rural settings.
  • Data provides policy makers and funders with compelling evidence regarding the need for services. Systemic, baseline data on NCDs is needed to direct Ministry of Health programs and to secure better funding for noncommunicable disease programs in Mozambique.
  • Building a patient registry is a key step to better, more robust data on NCDs. Patient registries in low-income countries like Mozambique should be as inclusive of NCDs as possible. They should include risk factors related to both poverty and lifestyle. Especially in poor, rural, and peri-urban settings, is it important to understand whether NCDs are the result of lack of access to health care or lifestyle choices.

Local barriers to care

In 2005, Mozambique conducted a STEPS survey to measure traditional lifestyle risk factor prevalence, aggregated at the national level. This survey showed some indications of a changing pattern of disease, but the limited diseases and traditional risk factors captured in the STEPS survey are insufficient to understand the needs of those living with NCDs in the poorest areas.

National planners and implementers need data to understand an expanded list of diseases and risk factors, and to support calls for funding of these research efforts. The Ministry of Health in Mozambique is searching for funding to implement its treatment programs, and cannot fully support the research being done by Dr. Mocumbi’s team.

Program successes

Under Dr. Mocumbi’s leadership, the NCD Division at the National Public Health Research Institute developed research protocols to begin broader NCD research. In 2014, her team opened a clinical research site at a tertiary hospital – the Mavalane General Hospital, which will be used as a sentinel surveillance site for noncommunicable diseases. On the edge of Maputo, this 260-bed tertiary hospital has a catchment area of 800,000 on the outskirts of the capital.

The pilot disease registry program will track the morbidity of patients admitted to the Mavalane General Hospital, and over time data will be deepened to better represent the entire population. Data from that study will inform national strategic plans and the development of more detailed, disease-specific registries in Mozambique.

Diseases being tracked in the pilot program include:

  • Diabetes
  • Cardiovascular diseases (such as systemic hypertension, cardiomyopathies, rheumatic heart disease, and complications of infections like HIV, schistosomiasis, and tuberculosis)
  • Mental health (including depression, epilepsy, schizophrenia, and alcohol abuse)
  • Stroke
  • Renal failure
  • Asthma
  • Trauma

Using the Maputo sentinel facility as a pilot, the NCD research unit at the National Public Health Institute plans to implement a national NCD registry, compiled from data collected at the peripheral level. It will include an expanded list of diseases and risk factors that more appropriately measure the disease burden in Mozambique, especially in peri-urban and rural regions.

Biography of key leaders

Dr. Ana Olga Mocumbi is a cardiologist at NCD Division at the National Public Health Research Institute in Mozambique. She is the research counterpoint to the NCD focal point in the MOH for Mozambique, working to better define the activities in the strategic plan and investigate major NCD challenges at the community level. She arrived at the National Public Health Research Institute in 2011 and leads a team that includes two general practitioners, a nurse, a social scientist, and a biomedical scientist, all working full time to do research at the national level. She has published several articles on neglected cardiovascular diseases and NCDs in the African context.