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@article{Modi:2019:10.3310/pgfar07060,
author = {Modi, N and Ashby, D and Battersby, C and Brocklehurst, P and Chivers, Z and Costeloe, K and Draper, ES and Foster, V and Kemp, J and Majeed, A and Murray, J and Petrou, S and Rogers, K and Santhakumaran, S and Saxena, S and Statnikov, Y and Wong, H and Young, A},
doi = {10.3310/pgfar07060},
journal = {Programme Grants for Applied Research},
pages = {1--396},
title = {Developing routinely recorded clinical data from electronic patient records as a national resource to improve neonatal health care: the Medicines for Neonates research programme},
url = {http://dx.doi.org/10.3310/pgfar07060},
volume = {7},
year = {2019}
}

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TY  - JOUR
AB  - BackgroundClinical data offer the potential to advance patient care. Neonatal specialised care is a high-cost NHS service received by approximately 80,000 newborn infants each year.Objectives(1) To develop the use of routinely recorded operational clinical data from electronic patient records (EPRs), secure national coverage, evaluate and improve the quality of clinical data, and develop their use as a national resource to improve neonatal health care and outcomes. To test the hypotheses that (2) clinical and research data are of comparable quality, (3) routine NHS clinical assessment at the age of 2 years reliably identifies children with neurodevelopmental impairment and (4) trial-based economic evaluations of neonatal interventions can be reliably conducted using clinical data. (5) To test methods to link NHS data sets and (6) to evaluate parent views of personal data in research.DesignSix inter-related workstreams; quarterly extractions of predefined data from neonatal EPRs; and approvals from the National Research Ethics Service, Health Research Authority Confidentiality Advisory Group, Caldicott Guardians and lead neonatal clinicians of participating NHS trusts.SettingNHS neonatal units.ParticipantsNeonatal clinical teams; parents of babies admitted to NHS neonatal units.InterventionsIn workstream 3, we employed the Bayley-III scales to evaluate neurodevelopmental status and the Quantitative Checklist of Autism in Toddlers (Q-CHAT) to evaluate social communication skills. In workstream 6, we recruited parents with previous experience of a child in neonatal care to assist in the design of a questionnaire directed at the parents of infants admitted to neonatal units.Data sourcesData were extracted from the EPR of admissions to NHS neonatal units.Main outcome measuresWe created a National Neonatal Research Database (NNRD) containing a defined extract from real-time, point-of-care, clinician-entered EPRs from all NHS neonatal units in England, Wales and Scotland (
AU  - Modi,N
AU  - Ashby,D
AU  - Battersby,C
AU  - Brocklehurst,P
AU  - Chivers,Z
AU  - Costeloe,K
AU  - Draper,ES
AU  - Foster,V
AU  - Kemp,J
AU  - Majeed,A
AU  - Murray,J
AU  - Petrou,S
AU  - Rogers,K
AU  - Santhakumaran,S
AU  - Saxena,S
AU  - Statnikov,Y
AU  - Wong,H
AU  - Young,A
DO  - 10.3310/pgfar07060
EP  - 396
PY  - 2019///
SN  - 2050-4322
SP  - 1
TI  - Developing routinely recorded clinical data from electronic patient records as a national resource to improve neonatal health care: the Medicines for Neonates research programme
T2  - Programme Grants for Applied Research
UR  - http://dx.doi.org/10.3310/pgfar07060
UR  - http://hdl.handle.net/10044/1/76703
VL  - 7
ER  -

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