JMIR Publications

ABSTRACT

Background:

Patient organizations (POs) are an integral part of the healthcare landscape, serving as advocates and support systems for patients and their families. As the digitalization of healthcare accelerates, POs are challenged to adapt their diverse roles to digital formats. However, the extent and impact of POs' digital adaptation remains underexplored.

Objective:

The aim of this study was to examine the digital transformation processes within POs. We examined what kind of digital activities and processes are being implemented, who is involved in respective tasks, what challenges are encountered, and which attitudes towards the POs digitalization exist.

Methods:

The study was carried out by the multi-center interdisciplinary research network PANDORA. We adopted a qualitative, explorative approach conducting n=37 semi-structured interviews and n=2 focus groups with representatives and members of POs in Germany. Results were obtained through a deductive-inductive approach based on Kuckartz's qualitative content analysis. Methods and results were reported in accordance with the Consolidated Criteria for Reporting Qualitative Research.

Results:

POs primarily apply basic digital tools to engage in communication, health education, and information dissemination. Some also develop specific mobile applications 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. Many interviewees also referred to the importance of involving members in digitalization efforts to better meet their needs. However, they described the actual practices used to involved members in (e.g.) developing digital services as limited, passive or implicit. When evaluating digital transformation processes, representatives and members of POs frequently expressed generally positive attitudes and acknowledged its potential to improve accessibility of support services, management efficiency, and outreach. Still, resource constraints, the complexity of digital initiatives, and accessibility issues for certain demographic groups, especially the elderly, were frequently mentioned as challenges. Several 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 to further shape and sustain digital activities and processes, POs may benefit from governance frameworks, i.e., a clear plan for with whom, how, and with which 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.