Establishing a Nation Wide Infrastructure for Systematic Use of Patient Reported Information

In Denmark, we have set up a program to establish a nationwide infrastructure for Patient Reported Outcome (PRO) questionnaires. The effort is divided into an IT infrastructure part and a questionnaire development part. This paper describes how development and evaluation are closely knit together in the two tracks, as complexity is high in the PRO field and IT infrastructure, legal issues, various clinical workflows and the numerous stakeholders have to be taken into account concurrently. In the design process, we have thus used a participatory design approach to ensure a high level of active stakeholder involvement and capability of addressing all the relevant issues. In the next phases, we will apply the IT infrastructure in the planned full-scale evaluation of the questionnaires developed in the first phase, while we continue to develop new national questionnaires.