Lack of data, particularly in low- and middle-income countries, combined with the absence of international standards for data management, is hindering efforts in measuring progress toward meeting the United Nations Sustainable Development Goals (SDGs) according to a viewpoint published in the international medical journal The Lancet.
“We cannot make progress without being able to measure progress,” said Dr. Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization (WHO). “Strong health data is essential for highlighting who is being left behind, and why. Together, WHO and IHME and other partners are working to strengthen country data systems for better decision-making, and better health.”
The viewpoint is a collaboration by global health experts from several countries and organizations, including WHO and the Institute for Health Metrics and Evaluation (IHME) at the University of Washington’s School of Medicine. Other authors include health experts from Brazil, Ethiopia, India, and Russia.
“Openly sharing data ultimately lays the foundation for the best health practices—those that are informed by the best possible science that draws from all available data and represents the best evidence base at a given point in time,” according to the authors. “Good measurement itself is not political—rather, the actions that are based on good measurement are political, as societies must make their own decisions and agendas, informed by the available data, national values, and social priorities.”
“Why is it that, in this day and age, we as a global community of nations do not have the courage and commitment to share data that would improve people’s lives to the fullest?” said IHME’s Director Dr. Christopher Murray. “We are 10 years away from the 2030 deadline for the SDGs, and the whole world is watching.”
“The collaborative scientific model espoused by the GBD [Global Burden of Disease study] is one example of how to establish highly standardised approaches to data processing and synthesis while also fostering broad ownership,” according to the viewpoint, which was published November 22.
IHME is the convening body of the GBD study, the world’s largest and most comprehensive effort to quantify health loss. It draws on the work of nearly 4,400 collaborators from 147 countries and territories. The GBD 2019 study will be released in May of 2020.
“The collaborative scientific model espoused by the GBD is one example of how to establish highly standardised approaches to data processing and management while also fostering broad ownership,” according to the viewpoint.
The viewpoint also notes that in 2016, WHO led the creation of guidelines for substantiating data collected on diseases, injuries, and deaths, a two-year collaboration among experts from IHME and several of the world’s most prestigious health institutions.
The Guidelines for Accurate and Transparent Health Estimates Reporting, or GATHER, promote best practices in reporting health estimates. Work to formulate the guidelines was funded by the Bill & Melinda Gates Foundation.
The guidelines are intended to inform and direct the reporting of estimates of health indicators like causes of death, the incidence and prevalence of diseases and injuries, and indicators of some health determinants, such as people’s behaviors. They are designed to apply to studies that calculate health outcomes for multiple populations by combining several sources of information.
The authors note that GATHER represents “a powerful way to improve trust across all segments in society” and go on to state that WHO estimates of child mortality, maternal mortality, and tuberculosis are fully compliant with GATHER, as are all outcomes produced by the GBD collaboration.
However, “many efforts that generate global health estimates are not compliant with GATHER,” and “national governments report data to WHO or other agencies but do not clarify if the data can be publicly shared,” according to the viewpoint.
The authors intend to measure the quality and progress of countries’ disclosure of health data and to update their analysis annually.
Among the authors’ recommendations are:
- Led by WHO, the international community should provide resources and technical assistance to countries.
- Standard approaches to data management reflecting current best practices should be developed and promulgated.
- GATHER should be strengthened, and the scope of the guidelines should cover all health-related SDGs and inputs, including population estimates.
- Countries with analytical capacity should apply the standards for data processing and management to their own data in a transparent manner consistent with GATHER.
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