Data collection

In Edinburgh we have a computerised clinical information system with access available at each cotside.

This system uses web based technology and stores clinical information entered by the staff, as well as automatically gathering and displaying data from monitors.

All information is available at the cotside and forms part of the clinical notes.

Summaries are produced automatically and the system links the notes to unit guidelines, protocols and drug formulary as well as allowing access to a knowledge database.

Staff are automatically ‘pointed’ towards information relative to the problems of the baby.

Using this system, baby diaries have been developed and tested. These have been used as a means of communication between the baby and the parents. Nurses add entries, often as if the baby is writing, which give parents some personalised information on their baby. The parents have found these a valuable source of information and comfort (Stenson B. Promoting attachment, providing memories. BMJ 1996;313:1615). Access to the diaries is currently only available within the unit and the entries do not include any detailed clinical information or any links to guidelines or a knowledge database.

A recent paper (Gray JE, Safran C, Davis RB et al. Baby CareLink: Using the internet and telemedicine to improve care for high-risk infants. Pediatrics 2000;106:1318-1324) reviewed an internet based telemedicine program in USA which had been developed using funding from NIH. This system is similar to the one we hope to develop and gives parents secure access to clinical information about their babies as well as links to a clinical knowledge database. Parents are able to get involved in decision making about their baby. In a multicentred, randomised controlled study, use of such a system was shown to significantly improve family satisfaction with inpatient care as well as reducing length of stay.

The authors conclude that the use of telemedicine and the internet supported the educational and emotional needs of families facilitating significantly earlier discharge home of very low birthweight infants.