STEP 4: COLLATE data in a comparable way

Once a birth is reached by a data system, the key data elements are assessed and recorded, for the data to be available for wider public health use, it must be collated within the data system. Closing this gap will require improved understanding of current practice and barriers and enablers to data collation. Common approaches across data systems are discussed below with further details in Annex A.6.4.

Currently even when recorded, data collected around the time of birth are not always reported in aggregated data. For example, CRVS systems infrequently report fetal death data even when collected, and many DHS surveys in West African region collect data on stillbirths, but do not analyse and report these in their aggregate data. A similar pattern is seen for HMIS where a recent review of HMIS systems in 24 countries found that, whilst all systems recorded stillbirths, only 71% of countries use registers which capture information on timing (antepartum/ intrapartum) and all of these use fresh or macerated stillbirth as proxies, and in only 42% of countries could this information be obtained from the current summary form.384 _{The diagnosis}

of preterm birth was only recorded in the registers of nine countries, and summary forms of six countries. Registers in 19 countries (79%) had a designated place to record birthweight. Birthweight information is aggregated up the HMIS system as birthweight<2500g in the summary form in 18 countries (75%), and in 4 countries as birthweight<2000g (17%).

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Whilst every birth should be reached, assessed and recorded, not all will meet the requirements for collation for local, regional, national or international comparisons. Normative standards for data collation and reporting are required to ensure comparability.

Normative standards for data collation and reporting

Accurately assessing and recording the key data elements in a standard way, as detailed above, will allow for aggregation and collation of these data in a comparable way up the system to the facility, district, national and then global level. Whilst all countries have their specific requirements for data to use at a local, regional and national level – these data should be collated in a way that enables disaggregation for reporting using standard definitions.

The body of work in this PhD has demonstrated good adherence to the relatively simple definitions for numerator for preterm birth and low birthweight. However, adherence to the ICD stillbirth definition is poor, with many different non-standard definitions currently in use. With regard to denominator issues, low birthweight data had the most substantial issues due to a large number of babies without a birthweight recorded in some data systems, with stillbirth and preterm birth collated data affected to a lesser extent. It is recommended that the denominator reflect the total number of births with the relevant key data element measured for example in the case of low birthweight rate, the denominator should include only babies who are weighed. The proportion with missing birthweight should also be reported alongside the low birthweight rate, with details of how this may impact the generalisability of the result to assist with interpretation of the data and comparisons over time and with other settings. Efforts should be made to improve awareness, guidance, training and supervision for all those involved in the collection and aggregation of data to improve practical adherence to the standard definitions and correct classification of every birth and correct use of denominators.

Proposed updates to normative guidance

Whilst normative guidance is available from WHO’s ICD, in the case of stillbirth, the field of perinatal epidemiology is changing more rapidly than the guidance, and classification guidance based on birthweight threshold is no longer considered appropriate in view of new perceptions around viability and new, increasingly accessible and more accurate methods of gestational age assessment. The increasing quantities of high quality perinatal data collected and analysed in Europe and North America have improved our overall understanding in this field, and are driving both clinical care and societal and programmatic priorities.218,229,385 _{In addition, the}

understanding of the current ICD-10 criteria of ‘birthweight or if not available, gestational age or length at birth’ are poorly understood; with many countries adopting a ‘birthweight or gestational age’ approach instead which is difficult to interpret in view of the fact that the

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birthweight and gestational age thresholds are not equivalent, and in the aggregate data there is no method of knowing what proportion used which method. Whilst most health facilities could measure birthweight at the time of delivery, in reality despite three quarters of all births occurring in a health facility, less than half of the world’s births are weighed, and even fewer stillbirths are weighed. In practice, gestational age is used rather than birthweight to define a stillbirth in household surveys, most middle and high income countries, and increasingly in low income settings.

An additional challenge with the current ICD stillbirth definition is that it does not allow differentiation between terminations of pregnancy and spontaneous fetal deaths. As discussed above, in settings with low rates of spontaneous fetal deaths, but widespread fetal anomaly screening and where termination of pregnancy for fetal anomalies is legal, this can account for an important proportion of all early fetal deaths.94,222

WHO recommends collecting data on all fetal deaths ≥22 weeks, collating information only on late fetal deaths (≥28 weeks) for international comparisons. However, early fetal deaths account for 1/3rd _{of all stillbirths in data rich settings.}386 _{Including these babies in international}

comparisons across data rich MICs and HICs could make international comparisons more informative for clinical practice and policy in HIC and many MIC settings and would allow consistency with reporting of neonatal deaths which are reported regardless of gestational age, but in practice are uncommon prior to 22 weeks.386 _{It could also play a role in acknowledging}

the burden of these deaths on affected families. However, attention will need to be paid to those around the threshold of viability as even in HIC capture of these babies in data systems is variable.

In summary, it is recommended that ICD-11 guidance be changed to reflect the changing public health needs to include gestational age threshold in preference to the existing birthweight one, and to make clearer the importance of collecting the minimum perinatal data for each birth and death to allow disaggregation by different gestational age groups and TOP. It is recommended that the revised ICD definitions be followed by all UN normative guidance for both CRVS and HMIS systems.