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BIOEF_FY2014 [BIOEF_FY2014] [20133306] - Operating Grant
Mission and vision of the operating grant holder

EuroNeoNet (ENN) is a specialized neonatal network to provide networking to European neonatologists and other stakeholders a tool to perform quality assurance and benchmarking, and a framework to facilitate the development of high-quality outcome epidemiological research, implement quality improvement initiatives and randomized clinical trials. ENN is affiliated to the European Society for Paediatric Research and the European Society for Neonatology (ESPR/ESN).

The ENN Mission is to enhance neonatal networking to help neonatologist to promote a culture for quality of care improvements and patient safety, family-centered and developmental care and dissemination of evidence-based interventions, e-learning, and to effectively conduct academically-driven clinical trials, case-control, cohort, cluster and nested studies.

Our Vision statement is that all Very Low-Gestational Age (VLGA, <32 weeks) and Very-Low-Birth-Weight (VLBW, <1500 g) newborn infants born in Europe, receive the best possible health care no matter where born, by preventing any existing inequalities and that all Neonatal Units shear a standardized perinatal risk and protective factors, neonatal interventions and short- and long-term outcomes for those tinny and vulnerable infants.

Our organization values are guided by the democratic, transparency, equal opportunity, values common to the European culture, and to shear all information gathered to help any interested stakeholders.

Our strategic aim is to consolidate a standardized set of health indicators to assess the quality of health care delivered to very premature infants by European institutions, regions and countries. We aim to reduce neonatal morbidity and mortality and improve their health status at 2 years, detect any inequalities that might exist.

Communication to the key interested stakeholders is mainly performed via our interactive website (, but periodic reports, newsletters, leaflets, publications, abstracts and presentations are also periodically and widely disseminated.

Strategic objectives and specific activities

Network’s general objectives are annually reviewed and evaluated to maintain a data collection system composed of a set of neonatal indicators to assess neonatal quality of health care and outcomes, standardized by major prognostic factors (i.e. BW and GA), in immature infants of VLGA (<32 wks) and/or VLBW (<1500 g)). About 80 items are prospectively collected from birth to either death or discharge for all live-born infants admitted to NICUs, including perinatal risk/protective factors, neonatal interventions and adverse events, short-term mortality and morbidity outcomes and long-term follow-up on health neurodevelopment outcomes.
This year, inclusion of socio-economic status (SES) indicators and patient safety by recording information on hospital acquired infection (HAI) is going to be piloted.
Specific objectives are: 1) Promote cooperative actions to increase efficacy and effectiveness of health services provided to VLBW infants; 2) establish unified protocols to guarantee quality of these services; 3) provide each unit the possibility to have standardized comparisons to other institutions or countries with different health systems and resources; 4) help units to identify opportunities to improve the attention and monitor success of their efforts in specific areas; 5) promote patient safety by excluding unsafe practices; 6) evaluate emerging technologies for its possible incorporation into clinical practice;7) facilitate exchange of experiences and personal communication between professionals and European countries colleagues; 8) promote outcome research, cohort studies, and perform academically-driven randomized clinical trials; and 8) provide a platform for neonatology continued education.
To achieve general objectives, main activities subject to a multi-annual planning are
1. Develop and validate a new set of indicators (SES and HAI items) to assess, discriminate and compare more accurately outcomes between units and, to study more in depth a significant health care provided to VLBW/VLGA infants outcome, such as HAI. Activity led by: Biostatistician (B) (15% of dedication), Network Administrative (NA) (25% of dedication) and Coordinator’s (CO) support (10% of dedication).
2. Develop and maintain standardized morbi-mortality indicators, to assess health care process and outcome between units over time (benchmarking). Large number of units from different countries, some with quasi-population-based data, permit inter-regional comparisons to identify differences in outcomes related to clinical variability. Indicators also help units to identify areas with opportunities to improve quality-of care (external audit; led by Technical Quality (TQ), 30%), and to monitor success in their improvement efforts (led by NA, 25%).
3. Standardize and analyze data by indirect standardized rates to overcome effects of case-mix of crude rates comparisons. Frequency, percentiles and extreme values of variables are checked to identify interventions’ and outcomes’ clinical variability that may be associated with adverse indicators of health care process and/or short-term morbidity outcomes. Centres are informed of extreme values detected. Logistic regression is used to model the probability of a given patient event, adjusting for independent perinatal risk factors associated to each outcome analyzed. This is mainly B’s responsibility (85%) with the CO’s help (25%).
4. A comprehensive annual report is prepared and distributed to all NICUs, where they are anonymously ranked according to their performance on interventions, diagnoses and morbi-mortality outcomes, adjusting for case-mix; units’ global length of stay is described and compared and units are profiled according to a set of process and outcome indicators by standard ratios, percentile ranking and typifying to allow Units to compare to other Units in Europe for each indicator, and to identify their own strengths and especially areas of weakness. A GA groups specific report is performed for units sending data since 2006. Activity led by the CO (40%) with the TQ staff’s support (70%).

Expected outcomes

Networking is an effective way to monitor quality-of-care delivered to VLBW/VLGA infants, promote the use of evidence-based interventions, support clinical research and disseminate health information. The strategic aim is to implement an information system (IS) in European institutions, regions and countries. The main objective is to allow units to perform standardised outcomes comparisons with reference to other units of similar size or level, and all units pooled together to analyze differences in clinical practices and outcomes to identify areas for quality of care improvement and assess the success of quality improvement initiatives.
1. Expansion of the IS. To expand the dataset including SES indicators and develop a new subset of data related to HAI. Items will be discussed and agreed upon SC members, data collection sheets and procedures implemented and piloted in a minimum set of units participating in the ENN initiative to assess and evaluate its feasibility and usefulness before including them in the definite ENN dataset.
2. Maintenance and evaluation of the IS. To routinely collect, maintain and evaluate a standardized set of perinatal specific indicators of perinatal events, neonatal interventions and long-term outcomes in participating units caring for > 7000 VLBW/VLGA infants/ year in over 150 institutions, including regional/national networks.
2014 VLBW/VLGA infants data will be prospectively collected from birth to death or hospital discharge either in paper forms, electronically or via Web Site. Database will be maintained anonymous, using a unique code for each baby. Data quality checks will be done at data entry, checking for missing values, outliers, discrepancies/incoherence to notify units. A random 5% of datasets will be double-checked. Data quality check methods are independent from number of registers and one person’s fully responsibility. Once validated, data is pooled and housed in web databases, stored in an external server, administered by an independent specialized company ensuring its availability, scalability and security.
Data that could direct or indirectly identify patients will remain within units. Procedures will adhere to international protection data and personal identity procedures and legislation. Partners are guarantors of safety of database, which will only be used to achieve the project`s aims.
3. Data analysis. To analyze data and produce annual reports to assess health care process and outcome results between units over time (benchmarking). Methodologically, a prospective, multicentric descriptive study will be designed to measure morbi-mortality rates in VLBW/VLGA infants born in 2014. BCO will perform indirect standardized rates to overcome effects of different population perinatal factors composition; percentiles and extreme values checking to identify variability of interventions and outcomes; and Logistic regressions to model the probability of someone having an event. Moreover, ENN data is available for any research project under approval of SC members and uploaded in the website allowing centres autonomously to perform, display and download statistics and graphics at three different levels: unit, region and country.
4. Dissemination of the results. Knowledge of clinical variability could provide insights into better ways to deliver care and to promote wide-scale consensus in policies and strategies to be used for care of VLBWI.
Reports performed besides being delivered to all participating units, will also be disseminated to health authorities, neonatologists, obstetricians, pediatric and pediatric sub-specialists, nurses and personal involved in neonatal/child care as well as interested parties in perinatal/neonatal sociology, epidemiology, public health, child education, social services, representatives of parental associations. Printed copies will be rarely used; network products will be mainly disseminated by email, electronically or will be available in our website.

Start date: 01/01/2014
End date: 01/01/2015
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 100 000,00