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Data collection & documentation


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Information on the quality of neonatal healthcare is required for understanding and improving health outcomes. (1) This implies that well-constructed, comparable performance indicators based on timely, high-quality, and risk-adjusted data are standardised and easily accessible as well as understandable for parents, healthcare professionals, and decision makers. (1,2) At the moment, systematically structured data collection is often neither organised at obstetric or neonatal units nor coordinated on a national or even on an international level. Regular, interactively scalable reports are lacking. Furthermore, quality and health indicators which best reflect the needs and are the most relevant to document quality of neonatal care, are not yet identified. (3–6)

Effective reporting would reach all target groups, provide answers to a broad range of questions, and help to develop prevention strategies. Long-term follow-up is essential for evaluating outcomes, especially for high-risk newborn infants. (7) By applying methods for inter-hospital, regional, national, and international comparisons, easy readability, differentiated interpretation, and analysis of trends over time is facilitated. Information portals should reflect these national and international benchmark programmes (1,8) comparing data at national level to highlight differences in healthcare between countries. (8,9) These data provide diverse stakeholders with important information on structural, procedural, or outcome-related regional (10) differences in healthcare and on the allocation of resources. (11) In reporting, principles for providing evidence-based information and data for patients should be followed. (12,13)

The Topic Expert Group on Data collection and documentation develops standards related to the acquisition and use of perinatal and neonatal data.

  1. Public Health Data Standards Consortium PHDSC. Promoting Standards Through Partnerships [Internet]. [cited 2018 Jul 10]. Available from: http://www.phdsc.org/
  2. The EQUATOR Network. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement: guidelines for reporting observational studies [Internet]. [cited 2018 Jul 10]. Available from: http://www.equator-network.org/reporting-guidelines/strobe/
  3. Consensus Conference on Health Indicators, Statistics Canada, Canadian Institute for Health Information. The Health Indicators Project: report from the third Consensus Conference on Health Indicators. [Internet]. Ottawa: Canadian Institute for Health Information; 2009 [cited 2017 Sep 11]. Available from: http://epe.lac-bac.gc.ca/100/200/300/cdn_institute_for_health/health_indicators_project-ef/H118-61-2009-eng.pdf
  4. World Health Organization. 2015 Global Reference List of 100 Core Health Indicators. 2015.
  5. World Health Organization. Accountability for Women´s and Children´s Health. Recommendation 2: Health indicator [Internet]. WHO. [cited 2017 Oct 26]. Available from: http://www.who.int/woman_child_accountability/progress_information/recommendation2/en/
  6. European Statistical System Committee. EUROPEAN STATISTICS CODE OF PRACTICE. For the National Statistical Authorities and Eurostat (EU statistical authority) [Internet]. 2017 [cited 2018 Jul 10]. Available from: http://ec.europa.eu/eurostat/documents/4031688/8971242/KS-02-18-142-EN-N.pdf/e7f85f07-91db-4312-8118-f729c75878c7
  7. Saigal S, Doyle LW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet Lond Engl. 2008 Jan 19;371(9608):261–9.
  8. Helenius K, Sjörs G, Shah PS, Modi N, Reichman B, Morisaki N, et al. Survival in Very Preterm Infants: An International Comparison of 10 National Neonatal Networks. Pediatrics. 2017 Dec;140(6).
  9. Zeitlin J, Manktelow BN, Piedvache A, Cuttini M, Boyle E, van Heijst A, et al. Use of evidence based practices to improve survival without severe morbidity for very preterm infants: results from the EPICE population based cohort. BMJ. 2016 Jul 5;i2976.
  10. Infrastructure for Spatial Information in Europe. INSPIRE [Internet]. [cited 2018 Jul 10]. Available from: http://inspire.ec.europa.eu/
  11. Donabedian A. The quality of care. How can it be assessed? JAMA. 1988 Sep 23;260(12):1743–8.
  12. Bunge M, Mühlhauser I, Steckelberg A. What constitutes evidence-based patient information? Overview of discussed criteria. Patient Educ Couns. 2010 Mar;78(3):316–28.
  13. Lühnen J, Albrecht M, Steckelberg A. Leitlinie evidenzbasierte Gesundheitsinformation [Internet]. 2017 [cited 2017 Nov 22]. Available from: http://www.leitlinie-gesundheitsinformation.de/

Data collection and documentation in a nutshell


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Need for standards in Data collection and documentation

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Implementation of standards in Data collection and documentation

Standards at a glance

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