Digital Transformation in Patient Organizations: Interview and Focus Group Study
Authors: Wallraf Simon , Köthemann Sara , Wiesemann Claudia , Wöhlke Sabine , Dierks Marie-Luise , Schmidt Marion Andrea , van Gils-Schmidt Henk Jasper , Lander Jonas 
Published: December 2024

Background
Patient organizations (POs) are an integral part of the health care landscape, serving as advocates and support systems for patients and their families. As the digitalization of health care accelerates, POs are challenged to adapt their diverse roles to digital formats. However, the extent and form of POs’ digital adaptation and the challenges POs encounter in their digital transformation remain unexplored.

Objective
This study aims to investigate the digital transformation processes within POs. We examined the types of digital activities and processes implemented, people involved in respective tasks, challenges encountered, and attitudes toward the digitalization of POs.

Methods
The study was carried out by the multicenter interdisciplinary research network Pandora. We adopted a qualitative exploratory approach by conducting 37 semistructured interviews and 2 focus groups with representatives and members of POs in Germany. Results were obtained using a deductive-inductive approach based on a qualitative content analysis. Methods and results were reported in accordance with the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist.

Results
POs primarily apply basic digital tools to engage in communication, health education, and information dissemination. Some also develop specific mobile apps and collect health data through patient registries. Volunteers cover a considerable part of the workload. Sometimes, POs collaborate with external partners, such as health professionals or other nonprofit organizations. Furthermore, many (13/46, 28%) interviewees referred to the importance of involving members in digitalization efforts to better meet their needs. However, they described the actual practices used to involve members in, for example, developing digital services as limited, passive, or implicit. When evaluating digital transformation processes, representatives and members of POs expressed generally positive attitudes and acknowledged their potential to improve the accessibility of support services, management efficiency, and outreach. Still, resource constraints; the complexity of digital initiatives; and accessibility issues for certain demographic groups, especially older persons, were frequently mentioned as challenges. Several (15/46, 33%) interviewees highlighted POs’ increasing responsibility to support their members’ digital competencies and digital health literacy.

Conclusions
POs are actively involved in the digital transformation of health services. To navigate challenges and further shape and sustain digital activities and processes, POs may benefit from governance frameworks, that is, a clear plan outlining with whom, how, and with what objectives digital projects are being realized. Support from public, scientific, and policy institutions to enhance the process through training, mentorship, and fostering collaborative networks seems warranted.