Abstract
Background: There is an ever-increasing demand for improved communication with parents and their families. At present, parents gather information from multiple sources, which can lead to incorrect and/or inconsistent advice and information being received. The aim of this project was to develop, and evaluate a system that gives parents secure access via the internet to clinical information, extracted automatically from the electronic patient record and presented in a format appropriate to parents.
Method: Software has been written that searches the electronic record for any information specified by the system administrator, such as diagnoses, treatments and records of communication. The system then links automatically to a library of short parent information templates and creates a parent report that is clinically relevant to the problems of the individual baby. The administrator can define the format of the reports, as well as the frequency and time interval sampled. Reports are encrypted and sent to an internet server. Parents access the reports on the Babylink website (www.babylink.info/edinburgh), using their own log-in and password. They can also view their baby's diary, which contains photographs and non-clinical messages written by the staff. The web-site has an open area providing general details about the neonatal unit and generic information about common neonatal problems. As part of data validation, reports have been checked manually for accuracy. Parents can comment or ask specific questions about their baby on-line. This feedback has been used to develop the website and the content of the reports. The project was approved by the local ethics committee and parents give written, informed consent before information is forwarded to the website.
Results: The reports and diaries have been successfully implemented. To date the system has been live for 6 weeks. 23 families have been accessing reports on the internet. Two refused to be involved. There has been no negative feedback, with parents expressing very positive views. Many constructive comments have helped develop the website and the parent reports.
Conclusions: This system offers the facility for parents to access specific, up to date information about their baby. It can be used with any electronic record system from which data can be exported. Further developments include prospective tailored information about discharge planning and care of the baby at home. The effect of the system on parental perceptions of communication is being evaluated.
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Lyon, A., Freer, Y., Coyle, C. et al. 167 Babylink - A Web Based Tool to Improve Communication between Clinicians and Parents in A Neonatal Unit. Pediatr Res 56, 492 (2004). https://doi.org/10.1203/00006450-200409000-00190
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DOI: https://doi.org/10.1203/00006450-200409000-00190