Pregnancy registration systems can enhance health systems, increase accountability and reduce mortality

Abstract

As many low- to middle-income countries strive to achieve targets of reduced maternal, neonatal and infant mortality set by the Millennium Development Goals, health system innovations which can accelerate progress are being carefully examined. Among these are technologies and systems which aim to strengthen frontline health workers and the health systems within which they work, by enabling the registration of pregnancies, births and outcomes. Accurate, population-based numerators and denominators can help to improve accountability of the health system to provide expected routine antenatal and post-natal care, as well as emergency support and referral, as needed. The enumeration of women of reproductive age, followed by prospective, voluntary registration of pregnancies has the potential to support governments, health agencies, and the populations they serve, to ensure public health service delivery and to guide informed policies.

Résumé

Alors que beaucoup de pays à revenu faible ou intermédiaire s'efforcent d'atteindre les cibles de réduction de la mortalité maternelle, néonatale et infantile fixées par les objectifs du Millénaire pour le développement, on examine attentivement les innovations des systèmes de santé capables d'accélérer les progrès. Il y a notamment des technologies et des systèmes dont le but est d'épauler les agents de santé de première ligne et les systèmes de santé dans lesquels ils travaillent, en permettant d'enregistrer les grossesses, les naissances et les résultats. Des numérateurs et dénominateurs fiables et basés sur la population peuvent relever les responsabilités du système de santé dont on attend qu'il assure des soins prénatals et postnatals systématiques, ainsi qu'un appui et un transfert d'urgence, si nécessaire. Le dénombrement des femmes en âge de procréer, suivi de l'enregistrement potentiel et volontaire des grossesses, peut aider les autorités, les institutions de santé et les populations qu'elles desservent à garantir la prestation des services de santé publique et guider des politiques judicieuses.

Resumen

>A medida que muchos países de bajos a medianos ingresos se esfuerzan por alcanzar las metas establecidas por los Objetivos de Desarrollo del Milenio de reducir la mortalidad materna, neonatal e infantil, se están examinando cuidadosamente las innovaciones del sistema de salud que pueden acelerar los avances. Entre éstas figuran tecnologías y sistemas destinados a fortalecer a profesionales de la salud de primera línea y los sistemas de salud donde trabajan, facilitando el registro de embarazos, nacimientos y resultados. Los numeradores y denominadores exactos basados en la población pueden ayudar a mejorar la responsabilidad del sistema de salud de ofrecer los servicios rutinarios esperados de atención antenatal y posnatal, así como apoyo y referencias de urgencias, según sea necesario. La enumeración de mujeres en edad fértil, seguida del posible registro voluntario de embarazos, tiene el potencial de apoyar a los gobiernos, las instituciones de salud y las poblaciones que atienden, para garantizar la prestación de servicios de salud pública y guiarlas políticas informadas.

Key Words:

• health information systems
• registration of pregnancy
• maternity services
• maternal and infant health
• Bangladesh
• India

In much of South Asia and sub-Saharan Africa, where the maternal mortality burden is the highest, home-based delivery without skilled attendance remains highly prevalent. Yet, these are also the settings where reliable data on health services and outcomes, including morbidity and mortality, are rarely available from ongoing sources such as routine health management information (HMIS) or vital registration systems. Instead, mortality estimates often continue to be derived from sophisticated models using proxy data such as population samples and household surveys.¹ The infrastructural gaps and social conditions that impede the provision of routine antenatal care and facility-based delivery also prevent the collection of data necessary to “make every death count”.² For a health system to identify gaps in antenatal and post-partum care coverage, quality of care, and equity, a combination of universal population enumeration, individual registration (connecting specific pregnancies with timely service delivery), HMIS, and robust data on vital events (births, pregnancies, pregnancy loss and deaths) is invaluable. Without such basic metrics in place, targeting limited resources and programme accountability remain a challenge and leave the most disenfranchised and vulnerable at risk of being uncounted, and unaccounted for.

Improved public health data

In areas without these systems for data collection and analysis, Graham et al propose several options to monitor maternal mortality: censuses and multi-purpose surveys to measure pregnancy-related deaths at a national level (with optional follow-up verbal autopsy), Reproductive Age Mortality Studies (RAMOS) in representative sample areas for direct measurement of deaths, or conducting large maternal mortality surveys using the sisterhood method. In addition, they recommend registration of births and deaths in sample areas, and engagement of communities to support and improve reporting.³ Similarly, Bale et al, in their 2003 Institute of Medicine report, recommend robust and comprehensive surveillance of births and deaths as well as pregnancy registration to improve birth outcomes globally.⁴

Population-level data from well-designed, community-based pregnancy surveillance and registration systems make it possible for accountability to be enhanced and resource/service delivery gaps to be identified. The dearth of reliable information on pregnancies and birth outcomes in low and middle-income countries has often resulted in delays in implementing necessary policies and programmes where they are needed the most.⁵ Where universal pregnancy registration is not possible, Bale et al suggest’that sentinel areas such as those described above, or detailed health and demographic surveillance sites such as the participating sites of the International Network for the Demographic Evaluation of Populations and Their Health in Developing Countries (INDEPTH), or nationally representative sample vital registration systems with verbal autopsy (SAVVY), may substitute for estimates.^6,7 They are also often the only reliable source of data in countries where few deliveries occur in facilities or where the quality of facility data is poor. Ranging from simple paper-based household census ledgers, to sophisticated biometric or geospatially linked digital registries of individuals, these systems focus on living women and their families, rather than mortality statistics, to provide information for the development of evidence-based programming and performance. Individual and community-level data on service access, utilization and outcomes can be used to target health care coverage to traditionally disenfranchised populations, but also to measure the impact of public health programmes and policies stratified on numerous axes.^8–10 Meaningful use of these data sources can range from identification of and real-time response to lapses in service delivery or care for both mother and child, to aggregate analysis of regional or national performance, to providing a platform for research.^11,12

Improved outcomes in research and programmes: examples from India and Bangladesh

There are excellent examples of how well-conducted pregnancy surveillance and registry systems have resulted in enhanced health care coverage and health outcomes. The prospective vital events surveillance system established by Drs Abhay and Rani Bang in the Gadchiroli district of Maharashtra State (India) has used village-based community health workers to register pregnancies, fetal losses, live births, neonatal and infant deaths since 1988.^13,14 This registry has yielded population-based estimates of causes of maternal and neonatal death, which have allowed for the deployment of community-based interventions, strategically targeted at the principal contributors to mortality. Implementation of known interventions and testing of novel approaches have resulted in significant reductions in neonatal death.¹³ Recently, in the context of a research study, Baqui et al demonstrated a 34% reduction in neonatal mortality in the Sylhet district of Bangladesh, associated with pregnancy surveillance and registration that allowed antenatal and day 1, 3, and 7 neonatal home visits by trained community health workers.¹⁴ In this community, women primarily delivered at home, care seeking was low, and health system performance was sub-optimal – all leading to high rates of neonatal’mortality.¹⁵ In populations such as these, the direct and collateral benefits of pregnancy surveillance and registration are likely to be replicated when extended beyond the study boundaries.

Initially conceptualized by the State Rural Health Mission of Gujarat and later developed into a web-based mother-and-child tracking system (MCTS) by the Government of India's National Informatics Centre, the MCTS for registering pregnant women is now being adapted by states throughout India to monitor women's health during pregnancy.¹⁶ In Tamil Nadu, an adaptation of the MCTS software, the Pregnancy Infant Cohort Monitoring Evaluation (PICME) was established to ensure that women received necessary care during pregnancy.¹⁷ As in much of South Asia, women often travel to their maternal homes to deliver, resulting in challenges for traditional paper-based systems to support adequate continuity of care. For each woman, PICME generates a unique identifier, which facilitates access to clinical and obstetric records at any government hospital or primary health clinic she subsequently visits.

While this use of a networked digital health system is novel, the Health and Family Welfare Programme in Tamil Nadu has registered, followed and evaluated pregnancies since 1995. This registration and monitoring system, like many similar systems across the region, is founded upon a three-pronged strategy that includes: improved access to family planning methods and safe termination of pregnancy, improved access to high-quality antenatal care and institutional delivery, and timely access to appropriate emergency obstetric care.¹⁸ This state-led, unified strategy and commitment to reducing maternal mortality has contributed to Tamil Nadu's dramatic reduction in maternal mortality to 90 deaths per 100,000 live births in 2007, one of the lowest ratios in India.¹⁹

The pregnancy registration system in Karnataka State includes two complementary components: the Thayi card and the mother-and-child tracking system (MCTS). The Thayi card is an antenatal registration booklet provided to every pregnant woman by auxiliary nurse-midwives and includes a unique identification number, space for patient-specific health information (e.g. antenatal visits, anaemia status), and information pertinent to managing care during the pregnancy and post-partum period.¹⁹ The MCTS is an electronic registry that leverages information from the Thayi card, adding additional value and ensuring health workers' accountability to pregnant women. When the auxiliary nurse-midwife completes the Thayi card, a copy of the data is sent for electronic entry into the MCTS. All future Government maternity services provided are logged on the Thayi card and into the electronic MCTS via a mobile phone SMS text. The woman and the auxiliary nurse-midwife subsequently receive mobile phone reminders about upcoming antenatal care visits and other health information, including when scheduled appointments have been missed. The birth outcome and other health events are also entered into the MCTS. As this initiative aims to register all pregnant women in the community, supervisors are alerted to failures or delays in delivering optimal care, which can be traced back to specific inactions on the part of health personnel.²⁰

In northern Bangladesh, since 2001, sophisticated population enumeration systems have been deployed to define a population denominator of nearly 125,000 women of reproductive age.^10,21 Working with local partners and in collaboration with the Ministry of Health and Family Welfare, the “JiVitA^*” Maternal and Child Research project enrolled over 60,294 pregnant women in its first large trial between 2001 and 2007, exploring whether routine antenatal vitamin A supplementation could reduce mortality, as it previously had done in Nepal.²² Over 150,000 households continue to be GIS-mapped to facilitate longitudinal follow-up of this cohort as part of a series of large, randomized, controlled trials testing community-based maternal and neonatal strategies to reduce mortality.²³ The informed consent process assured participants that their information, including pregnancy status, was confidential and not shared with anyone beyond the study investigators and direct field supervisors responsible for their village.¹⁰ This and other, similar, large-scale pregnancy surveillance systems and nested research activities have contributed vital data to shaping regional policies and programmes over the past decade.^21,24,25 These include support for regional recommendations and national policies on Vitamin A supplementation in pregnancy and to newborns, documenting the consequences of micronutrient deficiencies, infectious diseases and adolescent pregnancy on birth outcomes, as well strengthing global donor attention toward research gaps in preterm birth and fetal loss.^24,25

Ethics and confidentiality

Pregnancy registration systems developed for the sake of research are now being modified and adapted by other government and non-government entities to enable broader district-level and national pregnancy registration programmes, linked to supportive maternal and neonatal health services. The implementation of state-led or non-government registration systems have a responsibility to ensure confidentiality and voluntary, informed consent for the use of the information being collected. As stated in the UN recommendations for vital statistics systems: “It is imperative that the public be fully informed about the objectives and values of civil registration”, that “the production of vital statistics meets users' needs with stated quality standards”, that useful reports are generated and made available to those who contributed to the system, and that public support is key to the use of these systems.²⁶

In sum, the enumeration of women of reproductive age, followed by prospective, voluntary registration of pregnancies and careful recording of vital events has the potential to serve as a resource for governments and health agencies to ensure public health service delivery where it is needed, guide decision-making to strategically target limited resources to problems according to their public health importance, and give special attention to the most vulnerable populations.²⁷

With the privilege of access to such data, however, comes a fundamental responsibility to safeguard individual rights to confidentiality and a duty to act to save lives.

Notes

* “JiVitA” is a project name that incorporates the abbreviation for Vitamin A, with the Bengali word for “alive”.