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

Area of Science:

• Health Informatics
• Clinical Research Infrastructure
• Patient-Reported Outcomes

Background:

• Establishing a nationwide Patient Reported Outcome (PRO) infrastructure presents significant complexity.
• Challenges include integrating IT infrastructure, addressing legal issues, adapting to clinical workflows, and managing diverse stakeholder needs.

Purpose of the Study:

• To describe the development and evaluation process for a nationwide PRO questionnaire infrastructure in Denmark.
• To highlight the integration of IT infrastructure development and questionnaire content creation.
• To emphasize the use of participatory design for stakeholder engagement.

Main Methods:

• A participatory design approach was employed to ensure active stakeholder involvement.
• The program is divided into two main tracks: IT infrastructure development and questionnaire development.
• Close integration of development and evaluation processes across both tracks.

Main Results:

• A nationwide infrastructure for PRO questionnaires is being established in Denmark.
• The participatory design facilitated the consideration of complex factors like IT, legal aspects, clinical workflows, and stakeholder requirements.
• Initial phases focused on design and development, with plans for full-scale evaluation and continued questionnaire development.

Conclusions:

• Integrated development and participatory design are crucial for establishing complex national PRO infrastructures.
• The Danish program provides a model for developing and evaluating PRO tools within a national healthcare system.
• Future phases will involve large-scale evaluation and expansion of national PRO questionnaires.