What Do You Want to Know? Investigating the Information Requirements of Patient Supporters

There is a vast amount of data associated with any one patient. It is challenging for medical staff to understand all this data. It is even harder for a lay person, who may not even know what medical terms mean. The research project BabyTalk-Clan aims to create personalized summaries of data for a lay audience. It uses sensitive, highly-detailed clinical data relating to a patient. This includes medication given, test results, notes made by medical staff, and continuous physiological signals such as heart rate. We took a qualitative approach to knowledge acquisition for user requirements. Using interviews and a focus group within a Grounded Theory methodology, we discovered that most lay users want only a very high-level summary of the baby´s state. What lay users do want is information about how the parents are coping, and what support they need. Findings were cross-validated through a questionnaire.