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The eRegistries Model

The eRegistries Initiative is dedicated to increasing the availability and timely use of routine maternal and child health data to improve the quality of care and health outcomes around the world.

Photo: NIPH.
ergistries conference.

The eRegistries Initiative

The eRegistries Initiative collaborates with partners globally to provide training and technical assistance to establish, build and manage electronic health registries utilizing the eRegistries framework. The framework addresses critical issues including legal and ethical concerns, software considerations, evidence-based indicator selection, training, and dissemination strategies that pertain to maternal and child health.

Our vision is a world in which health data is collected safely, systematically, and routinely and used effectively and efficiently to achieve the highest quality of health and well-being for women and children around the world.

Our mission is to strengthen the global capacity to systematically improve data quality and use by providing tools that support ethical, safe, legal, culturally appropriate, and efficient health registries that focus on maternal and child health. 

The eRegistries Strategy

The eRegistries strategy prioritizes country ownership and collaboration to promote long term sustainability and scalability. The eRegistries toolkits are designed to be adapted and customized to each unique setting. The eRegistries Initiative strategic features include:

  • Safe, secure and ethical data collection, management, and storage
  •  Evidence-based reproductive health indicators derived from the WHO essential interventions
  • Open source data collection platforms
  • Timely utilization of data by health care providers, women, families and public health officials

Why eRegistries?

The quality of maternal and child health data in countries with the highest burden of maternal mortality is often compromised by inaccurate, incomplete, and inconsistent data. Poor data quality diminishes trust which, in turn, may result in a data culture where health care providers are not motivated to invest in data collection and data users discount data validity.

Consequently, expensive data collections waste resources, time and information that could otherwise benefit of women and children. eRegistries are designed to maximize data use and address common challenges of health information systems so that data are  consistently and methodically utilized to inform  decision making.

The table below describes common situations that impede optimal data use and shows how an eRegistry is designed to manage these challenges.

 

Common data issues

Such as…

The eRegistries approach

Poor quality

Incorrect data entry

Validation rules and preset parameters

Missing data

Incomplete data entry from providers, facilities, and districts

Late and/or delayed reporting

Data entry and processing delays

Real-time data availability

Reporting burden

Multiple data entry and reporting requirements that displaces patient care time

Integrated and automated analysis and reporting

Insufficient analysis

Lack of data analysis capacity

Time lags

Publication and dissemination delays

Incomparability among indicators

Diverse and multiple definitions of indicators

Standard indicators for screening/ management, process/outcome and impact for all of the WHO essential interventions

Incomplete information

Gaps in documentation of the full spectrum of maternal and child health

Insecure systems

Fear of data privacy breaches

Ethical and legal guidance including public engagement

Lack of confidence

Policy makers discount the ability of data to accurately inform decision-making

Training on data use for decision-making

eRegistries and the global health agenda

Although significant progress has been made towards the Millennium Development Goal (MDG) targets for maternal and child mortality reduction, preventable maternal and child deaths still occur each year. To achieve the new Sustainable Development Goals (SDGs),  accurate and timely information is needed that clearly defines the remaining problems, challenges and needs.

Global health agencies, such as the WHO, World Bank, and UNICEF, have recognized the value and need for more and better health data as demonstrated by the following list of publications and reports:

The eRegistries Framework

A framework for the establishment, management, use, evaluation and accountability of electronic health registries for maternal and child health was originally funded by Norad (called the 'Harmonized Reproductive Health Registries Intiative') and was a collaborative effort among researchers globally. Formative research entailed:

  • A systematic literature review of maternal and child health registries in low and middle income countries;
  • A legal review of legislation, regulations and guidelines relevant to registries in select countries;
  • Web-based surveys assessing the status of maternal and child health registries in low and middle income countries; 
  • An expert panel review of existing and novel indicators for the WHO essential interventions.

  

eRegistries Domains-2.
eRegistries Domains-2.

Figure: Domains of the eRegistry framework