Accessibility of information

< Back to Data collection & documentation

Authors

Lack N, Bréart G, Bloch VVH, Gissler M, Göpel W, Haumont D, Hummler H, Loureiro B, Vavouraki E, Zeitlin J

Click on the image to read the standard in brief.

Target group

Infants and parents

User group

Healthcare professionals, neonatal units, hospitals, and health services

Statement of standard

Information on the quality of neonatal healthcare is collected, accessible, and understandable at national, regional, and hospital level.

Rationale

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, risk-adjusted data are easily accessible to parents, healthcare professionals, and decision makers (1,2) (see Data collection and documentation) Information portals should reflect national and international benchmark programmes (1,3) as analysis of comparable data at national level can highlight differences in healthcare between countries. (3,4) This provides diverse stakeholders with important information on structural, procedural, or outcome-related regional (5) differences in healthcare and on the allocation of resources. (6)

However, systematic structured data collection is often neither organised at obstetrical or neonatal units nor coordinated nationally. Available information is not standardised, accessible, or understandable by parents and healthcare professionals. Regular, interactively scalable reports are lacking.

Effective reporting would reach all target groups, provide answers to a broad range of questions, and help to develop prevention strategies. By applying methods for inter-hospital and regional comparisons, easy readability, differentiated interpretation, and analysis of trends over time is facilitated. Participation of units in national and international surveillance and research networks leads to collective work improving data quality and performance indicators. In reporting, principles for providing evidence-based information and data for patients should be followed. (7,8)

Benefits

Components of the standard

Component

Grading of evidence

Indicator of meeting the standard

For parents and family

  1. Parents are informed of data collection and the purposes to which it will be used by healthcare professionals.

B (High quality)

Parent feedback, parent information sheet1

  1. Data presentation is easily and intuitively understandable also for parents. (7–9)

B (Moderate quality)

Parent feedback

For healthcare professionals

  1. A consented guideline on data entry is adhered to by all healthcare professionals.

B (High quality)

Guideline

  1. Training on data entry and on the importance and rationale of data collection is attended by all responsible healthcare professionals.

B (High quality)

Training documentation

For neonatal unit

  1. A consented guideline on data entry and the use of (inter-)nationally agreed datasets is available and regularly updated.

B (High quality)

Guideline

  1. Data collected for surveillance are employed to evaluate healthcare practices and the organisation of healthcare practices and the organisation of healthcare for patients and families.

B (Moderate quality)

Audit report2

  1. Participation within local, national, and international surveillance and research networks is aimed for in order to develop methods for comparison across units.

B (Moderate quality)

Audit report2

For hospital

  1. Training on data entry is ensured.

B (High quality)

Training documentation

  1. Regular reports for analysis of temporal changes and local outcomes are available. (1,2,10,11)

A (Moderate quality)

Audit report2

  1. A system for quality assurance for the data collection process is established.

B (Moderate quality)

Audit report2, guideline

  1. Reports are systematically analysed and risk related interventions are initiated.

B (Moderate quality)

Audit report2, guideline

  1. Quality reports are publicly available.

B (Moderate quality)

Audit report2, parent feedback

For health service

  1. A national guideline on infrastructure for data capture and analysis, data entry, and the use of (inter-)nationally agreed datasets is available and regularly updated.

B (High quality)

Guideline

  1. Comparative data is used to benchmark outcomes (e.g. mortality and morbidity) at hospital, regional, national or international level over time adjusted for patient characteristics.

B (Moderate quality)

Audit report2

  1. Researchers, clinicians, policy-makers, parents, and users are involved in benchmarking processes in order to guarantee high quality and clinical and societal relevance.

B (Moderate quality)

Audit report2

  1. National neonatal outcomes are collated to inform policy decisions.

B (Low quality)

Audit report2

  1. Data is used for research and surveillance by trained epidemiologists and statisticians.

B (High quality)

Audit report2

1The indicator ‘patient information sheet’ is an example for written, detailed information, in which digital solutions are included, such as web-based systems, apps, brochures, information leaflets, and booklets.

2The indicator ‘audit report” can also be defined as a benchmarking report.

Where to go

Further development

Grading of evidence

For parents and family

  • Parents are given an active role in developing information policy.

B (Moderate quality)

For healthcare professionals

  • Coordinate with research networks to analyse data for (scientific) publications.

B (Moderate quality)

For neonatal unit

N/A

For hospital

  • Use automated record systems.

B (Moderate quality)

  • Follow high standards in reporting and accessibility of data. (10,11)

A (High quality)

For health service

  • Formalise international collaboration between stakeholders.

B (High quality)

  • Develop data comparison on an international level. (5)

A (Moderate quality)

Getting started

Initial steps

For parents and family

  • Parents are verbally informed of data collection and the purposes to which it will be used by healthcare professionals.
  • Parents’ concerns are integrated into the health information systems.

For healthcare professionals

  • Attend training in data entry and about the importance and rationale of data collection.
  • Collaborate with national professional healthcare societies.

For neonatal unit

  • Implement a consented guideline on data entry and the use of (inter-)nationally agreed datasets.
  • Develop information material on data collection and the purposes to which it will be used for parents.
  • Identify a person/team responsible for data quality.

For hospital

  • Support healthcare professionals to participate in training in data entry and about the importance and rationale of data collection.

For health service

  • Develop and implement a national guideline on infrastructure for data capture and analysis, data entry and the use of (inter-)nationally agreed datasets.
  • Provide infrastructure for data capture and analysis.
  • Define respective minimum datasets and provide suitable technology for their recording and analysis.

  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. 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).
  4. 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.
  5. Infrastructure for Spatial Information in Europe. INSPIRE [Internet]. [cited 2018 Jul 10]. Available from: http://inspire.ec.europa.eu/
  6. Donabedian A. The quality of care. How can it be assessed? JAMA. 1988 Sep 23;260(12):1743–8.
  7. 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.
  8. Lühnen J, Albrecht M, Steckelberg A. Leitlinie evidenzbasierte Gesundheitsinformation [Internet]. 2017 [cited 2017 Nov 22]. Available from: http://www.leitlinie-gesundheitsinformation.de/
  9. Lack N, Gerhardinger U. [Comparison of quality by means of funnel plots–a plea for a uniform methodology]. Z Evidenz Fortbild Qual Im Gesundheitswesen. 2009;103(8):536–41.
  10. The EQUATOR Network. Enhancing the QUAlity and Transparency Of Health Research [Internet]. [cited 2018 Jul 10]. Available from: http://www.equator-network.org/
  11. Standards for Quality Improvement Reporting Excellence (SQUIRE). [cited 2018 Jul 10]. Available from: http://www.squire-statement.org/

November 2018 / 1st edition / next revision: 2028

Recommended citation

EFCNI, Lack N, Bréart G et al., European Standards of Care for Newborn Health: Accessibility of information. 2018.

Next standard

Please click on the icons below to select one of the standard topics:

Birth & transfer
Ethical decisions
NICU design
Care procedures
Follow-up & continuing care
Nutrition
Data collection & documentation
Infant- & family-centred developmental care
Patient safety & hygiene practice
Education & training
Medical care & clinical practice