The BabyLink Project

The Royal Infirmary of Edinburgh, in conjunction with Clevermed Limited, has been nominated for a 2005 Healthcare IT Effectiveness Award in the category of ‘Best use of IT in secondary and tertiary care’.

The nomination is for their BabyLink project, designed to improve communications between clinicians and parents with babies in intensive care. The focus of the BabyLink project was to develop an Internet based web-platform linked to the baby’s electronic patient record (EPR). The BabyLink system enables clinicians and parents to securely log in and access clinical information (reports and photographs) about a specific baby in a format that they can understand. The platform is updated as new clinical data is added to the EPR, the platform also has explanatory information directly relevant to the problems of the infant, automatically linked to the clinical data and allows parents to post questions back to the relevant clinicians involved in their baby’s care.

The software, which was developed by Clevermed Limited, extracts the relevant data from the Neonatal Intensive Care Unit’s EPR system, encrypts this for transmission and then transfers it back to the BabyLink website’s server, also maintained by Clevermed. Specialised knowledgebase-authoring tools allow the project team to solely focus on content; the system automatically deals with page management and appearance. The hospital’s IT department ensured that the whole system was secure.

Research has shown a positive increase in parents’ levels of confidence in staff since the system has been available, with a greater number of parents also believing that doctors are now more specific with information provided. The amount of information on condition, investigations and treatment was also rated better by parents since the introduction of BabyLink. A greater number of parents reported satisfaction with the information available about breast-feeding, and parents felt more prepared for the transfer from intensive to special care and were happier with the amount of information given to them on their baby’s development.

Parents reported that the availability of information regarding financial assistance and hospital services had improved since the introduction of BabyLink. The research also revealed that more parents feel better prepared for their baby’s release from hospital since the introduction of BabyLink.

Planned extensions to the website include information on the neurobehavioural development specific to the individual infant to better educate parents’ expectations of their baby and possibly to reduce levels of depression and anxiety. The system will also in the future provide more information and support for parents after discharge from the unit, with links to the Unit’s community nursing team and the possibility of self-referral/booking of appointments. Information on health visitors, GPs and other healthcare professionals would then enable an integrated transition to long-term community care for infants and families with multiple needs. The system could also, in the future, easily be adapted to support parents who do not speak English.

As the platform has been developed using globally accepted standards (HTTP, HTML and the Internet) the architecture could be widely deployed in other fields of healthcare. The same intelligent links used by the platform between clinical data and information pages could also be readily achieved in any discipline.