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Data is an important topic in neonatal health. We took the opportunity to ask Dr Nicholas Lack and Professor Gérard Bréart, the Chair Team of our Topic Expert Group on Data collection and documentation, some questions on important issues in the field.

 

EFCNI: What would you say are the most important topics in Data collection and documentation?

Nicholas Lack (NL):

For me, these are

  • Recommendations for participation in and use of established data bases
  • Benchmarking of hospitals
  • International comparisons
  • General technical standards of data collection
  • Inclusion of data reflecting parent’s demands and expectations

 

Gérard Bréart (GB):

I fully agree. There is one additional point I would like to add. It is linked to the development of standards of care by the European Standards of Newborn Health project:

  • Evaluation of the implementation of the standards proposed by the other Topic Expert Groups

 

EFCNI: Why are they so important?

NL: I think mainly for three reasons:

  1. Some comparative databases with a good methodological basis already exist (e.g. eNewborn or EURO-PERISTAT). Use of these should be encouraged.
  2. Heterogeneity of health care systems is the bane of all international comparisons in quality of health care. Hence, recommendations for avoiding pitfalls in interpreting this type of data should be given.
  3. Parents concerns are typically overlooked. Thus they should be routinely included in formulation of any standard.

 

EFCNI: What are the major challenges in Data collection and documentation in Europe?

NL: I think there are really two major challenges, the accessibility of data and the comparability of data.

  1. Accessibility of data. Not all relevant data are regularly available. This increases the need for efficient proxy measures.
  2. Comparability of data. Due to different legal registration procedures and national differences in definitions not all standards as measured by indicators will be comparable.

 

EFCNI: How would you wish the field to develop?
What is your wish for the future of Data collection and documentation?

GB: If I had to formulate one wish, it would be to develop links with and standards for European and international data bases to be able to implement studies on quality of care with “comparable” data.

 

NL: With regard to the European Standards of Care for Newborn Health project, it is also the close collaboration with the other Topic Expert Groups to see how our formal requirement for data matches up to an actual application.

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