“That’s not trivial”: an interview study on involving members of German patient organizations in digital activities

Aim Patient organizations (POs) are nonprofit civil society actors that complement health care by providing health information, peer support, self-management resources, and representation. Many German POs are membership-based and rely on volunteer engagement, positioning members as both recipients of support and potential contributors to organizational activities. As digital activities increasingly supplement POs’ work, this study aimed to examine the feasibility of involving members in these activities from PO representatives’ perspectives. Subject and methods We conducted a qualitative interview study with individuals in leadership roles and staff with organizational expertise in nationwide German POs. Seventeen semi-structured interviews were conducted online or by telephone between July and November 2025 and analyzed using structuring qualitative content analysis. Results Interviewees described various digital activities, including information provision, support, and exchange, often through websites, social media, and online meetings, while advanced tools, such as apps, were uncommon. Member involvement mainly comprised consultation, content contributions, and taking on specific digital tasks or responsibilities. Feasibility was shaped by factors at three levels: the member level, including willingness, illness-related fluctuations, and digital skills and confidence; the organizational level, including limited staffing, time, funding, and competencies; and the process level, including the effort required for planning, coordinating, and facilitating involvement. Conclusion Involving members in POs’ digital activities appears feasible when involvement demands fit members’ capacities, organizational conditions, and process requirements. Such involvement may help align digital activities more closely with members’ needs, preferences, and everyday realities, thereby potentially strengthening the fit of the support POs provide through digital means.