Use of routine GOSH data for research
Research type
Research Database
IRAS ID
214972
Contact name
NJ Sebire
Contact email
Research summary
GOSH Clinical Informatics Data Store
REC name
London - South East Research Ethics Committee
REC reference
17/LO/0008
Date of REC Opinion
26 Jan 2017
REC opinion
Favourable Opinion
Data collection arrangements
Great Ormond Street Hospital (GOSH) is the largest childrens hospital in the UK and as part of the routine care of children at GOSH, a large amount of data is recorded as part of their routine care. Unfortunately, hardly any of this data that is collected is used to improve services or find out things which may help future patients. This project will make all of the data that is routinely collected non-identifiable, by using an encryption key for each patient, so that it is possible for researchers to use the data for patient benefit without needed to know any personal details such as names or other identifiers. The only data that will be stored will be that collected as part of routine care at GOSH, there is no 'additional' data collection. This non-identifiable data will be managed and stored in a dedicated GOSH research data store which has all usual NHS security arrangements and will only be used by GOSH and associated researchers who are investigating ways of improving child health care and/or outcomes.
Research programme
The aim of this project is to maximise use of the rich data that is collected routinely at GOSH as part of patient care, in order to improve how the hospital functions and to evaluate and develop new and better ways of caring for children at GOSH and beyond. This is something that is strongly supported by various Government publications and means that the unique patients that are seen at GOSH may benefit all future children, including those who subsequently attend GOSH, but also by trying to work out better ways of preventing diseases in children. The database will be used by researchers at GOSH and it's linked university department, the GOSH Institute of Child Health for projects relating to improving child health only.
Research database title
GOSH Clinical Informatics Data Store
Establishment organisation
Great Ormond Street Hospital
Establishment organisation address
Great Ormond Street
London
WC1N 3JH