About the BabyLink Project

Andrew Lyon; Ben Stenson; Yvonne Freer; Clare Coyle;
neonatal unit, Simpson Centre for Reproductive Health, Royal Infirmary of Edinburgh

Parents naturally want to be aware of everything happening to their baby and to be involved in the decisions made regarding treatment and care. However, prolonged discussions around every small aspect of care are often impractical for staff and parents and consultation processes vary greatly between neonatal units.

How then, do we define 'normal' clinical care?  Which practices require formal discussion with and consent from parents?  How do we present clinical facts in a way, which will minimise alarm, distress and misunderstanding for families? These questions inspired The BabyLink Project team to explore the possibility of marrying our experience of web-based clinical systems with the opportunity to improve communication with parents.

Our aim is to give parents access, via the Internet, to clinical details about their baby. By linking medical notes intelligently to unit guidelines and to a clinical knowledge database, parents will get information that is relevant to the specific problems of their baby. The system would also be used to improve discharge planning with parental and community involvement.

Families will have access not only over the Internet but also at a dedicated terminal within the unit (but not at the cot side). The parents, who will choose their own password, control access to a baby’s information. This can be shared with friends and family if parents wish. Sometimes parents may feel it is easier to ask a question on line rather than face to face and therefore they will be able to post messages and questions. The baby diaries will also be available on the website so parents can chart their baby's progress by this more informal means of communication.

The web site will be hosted on an Internet server, which is not connected to the hospital system. Information will be updated by secure connections between the unit database and this server. Parents accessing the server will be unable to connect directly to the hospital system.