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E-Patient Counseling Trial (E-PACO): Computer Based Education versus Nurse Counseling for Patients to Prepare for Colonoscopy

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Digital Transformation in Patient Organizations: Interview and Focus Group Study.

Simon Wallraf¹, Sara Köthemann², Claudia Wiesemann²

¹Institute for Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Hanover, Germany.

Journal of Medical Internet Research

|February 13, 2025

Summary

Patient organizations (POs) are adopting digital tools for communication and education, facing challenges like resource limits and member engagement. Enhanced digital literacy and support are crucial for their ongoing digital transformation.

Keywords:

digital transformation digitalization health research patient organization patient support

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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.