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BIOEF_FY2013 [BIOEF_FY2013] [20123305] - Operating Grant
Mission and vision of the operating grant holder

EuroNeoNet (ENN) is a specialised 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 randomised 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-cantered 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 s ithat 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 standardised 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 standardised 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 (www.euroneonet.org), but periodic report, newsletters, leaflets, publications, abstracts and presentations are also periodically and widely disseminated.

Strategic objectives and specific activities

The general objectives of the network were designed at the start of the network activities, but they are annually reviewed and evaluated for possible adjustments or modifications. The general objective is to maintain a data collection system composed of a set of neonatal indicators to assess both the neonatal quality of the health care process, and outcomes achieved, standardised by major prognostic factors (i.e. BW and GA), in immature infant of VLGA (<32 wks) and VLBW (<1500 g). A total of about 80 items are prospectively collected for all live-born infants admitted to neonatal care. Data include perinatal risk/protective factors, neonatal interventions and adverse events, as well as short-term mortality and morbidity and long-term follow-up on health and neurodevelopment outcomes. Data compilation is based on identification of all live-born VLBW/VLGA infants in participating units, and its prospective recording from birth to either death or discharge from units.
To achieve the general objectives, the following main activities based on the statutes and subject to a multi-annual planning are performed:

1. Develop and maintain a standardised morbidity and mortality set of indicators, to assess the health care process and outcome between participating units over time (benchmarking). A large number of units included from different countries and regions, some with quasi-population-based data, permit inter-regional comparisons to identify differences in outcome related to clinical variability. The indicators also help units to identify areas with opportunities to improve quality-of care (external audit), and to monitor the success in their improvement efforts.

2. Standardise and analyse data using indirect standardized rates to overcome the effects of different case-mix crude rates comparisons. The frequency, percentiles and extreme values of all variables are checked to identify clinical variability of interventions and outcomes by the methodology of events and interventions that may be associated with adverse indicators of the health care process and/or short-term morbidity outcomes. Participating centres are informed of any situation of extreme values detected. Logistic or Poisson regression are used to model the probability of a given patient event, adjusting for birth weight and gestational age.

3. A comprehensive annual report is prepared and distributed to all participating NICUs, where Units are anonymously ranked according to their performance on interventions, diagnoses and morbi-mortality outcomes, adjusting for case-mix. Global length of stay is also described and compared between units. Additionally the individual Units are profiled according to a set of process and outcome indicators, simultaneously examined by standard ratios percentile ranking and typifying.
The annual summary report allow all participating Units to know their own ranking compared to other Units in Europe for any indicator, and to identify their own strengths and especially areas of weakness.

Those main activities are planned to; 1) Promote cooperative actions to increases the efficacy and effectiveness of the health services provided to VLBW infants; 2) establish unified protocols to guarantee the quality of these services; 3) provide each participating unit the possibility to have standardised 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 of the professionals with colleagues of other European countries; 8) promote outcome research, cohort studies, and perform academically-driven randomised clinical trials, and 8) provide a platform for continued education for neonatology.

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 in European institutions, regions and countries. The main objective is to allow partner`s units to perform standardised morbimortality outcome comparisons with reference to other units of similar size or level of care, and to those of all units pooled together; to analyze differences in clinical practices and morbidity outcomes; to identify areas for quality of care improvement, and assess the success of quality improvement initiatives.
To achieve those aims, we propose: 1. To collect and implement a standardised set of perinatal specific indicators in participanting units caring for over 6000 VLBW/VLGA infants per year in over 150 institutions, including associate and collaboratingpartners, regional (N. Ireland, Lazio, Basque Country and Navarre,...), and national networks (Sweden, Belgium, Spain, Portugal, ...). 2. To establish and maintain a data-base with a set of perinatal events, neonatal interventions and neonatal and long-term outcomes. 3. To analyze data and perform an annual summary report for benchmarking and to be used by other NICU`s from Europe or elsewhere to know its relative position for any of the items included in it.

Prospective data collection will be performed in babies born in 2013, starting at birth and until death or hospital discharge form all partner`s units, either in paper forms, electronically or via Web Site. Database will be maintained anonymous, using a unique code for each baby.

Data quality check will be done at data entry, using a programmed code, checking for missing values, outliers, discrepancies/incoherence to notify units. A random 5% of datasets will be double-checked.. Once validated, data will be pooled and housed in web as a reference population.

Moreover, validated data is uploaded in the website allowing centres autonomously to perform statistics to know its relative positioning and to display and download of statistics and graphics at three different levels: unit, region and country.

Methodologically, a prospective, multicentric descriptive study will be designed to measure morbidity and mortality rates in VLBW/VLGA infants born at partners` units in 2013. Indirect standardised rates will be used to overcome effects of different population perinatal factors composition. Percentiles and extreme values will be checked to identify variability of interventions and outcomes by small area method. Logistic or Poisson regression will be used to model the probability of someone having an event. The chi2 test will be used to identify units which are "significantly different" from the overall data. All those procedures will be performed at BCO.

Expected outcomes are to assess health care process and outcome results between participating units over time (benchmarking). Knowledge of clinical variability of care process and outcomes could provide insights into better ways to deliver care and to promote wide-scale consensus in policies and strategies to be use for care of VLBWI.
Reports performed from data collected will also be disseminated to health authorities, neonatologists, obstetricians, paediatric and paediatric 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 and in any other party that might show interest in our expected results, output and deliverables.

Data that could direct or indirectly identify patients will remain within units. All 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.

Details
Start date: 01/01/2013
End date: 01/01/2014
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
Portfolio: Data collection