Digital Transformation in Patient Organizations: Interview and Focus Group Study

Area of Science:

• Health Services Research
• Digital Health
• Patient Advocacy

Background:

• Patient organizations (POs) are vital in healthcare, providing support and advocacy.
• Digitalization presents challenges for POs adapting their roles to online environments.
• The scope and difficulties of POs' digital transformation are not well understood.

Purpose of the Study:

• To investigate the digital transformation processes within patient organizations.
• To identify digital activities, involved personnel, challenges, and attitudes toward digitalization.
• To understand how POs are adapting their services in the digital age.

Main Methods:

• Qualitative exploratory study using 37 semistructured interviews and 2 focus groups.
• Conducted with representatives and members of patient organizations in Germany.
• Analysis based on a deductive-inductive approach and qualitative content analysis, adhering to COREQ guidelines.

Main Results:

• POs utilize basic digital tools for communication, education, and information dissemination; some develop apps and registries.
• Volunteers perform significant work, with some collaboration with external partners.
• Challenges include resource constraints, initiative complexity, and accessibility issues, particularly for older adults. Many POs recognize the need to improve members' digital health literacy.

Conclusions:

• Patient organizations are actively engaged in digital health service transformation.
• Governance frameworks and clear project plans are needed to manage digital initiatives effectively.
• Support from public, scientific, and policy institutions is essential for training, mentorship, and network development.