Between Willingness and Practice: Findings from a Nationwide Survey of 1,334 German Patient Organization Members on User Involvement in the Development of Digital Services

Simon Wallraf^1*Marie-Luise Dierks¹Sabine Wöhlke²Cosima John¹Jonas Lander¹

• ¹Institute for Epidemiology, Social Medicine and Health System Research, Hannover Medical School, Hannover, Lower Saxony, Germany
• ²Faculty of Life Sciences, Hamburg University of Applied Sciences, Hamburg, Hamburg, Germany

As the digital transformation of healthcare progresses, key actors such as patient organizations (POs) are adapting their activities and services to digital formats. This study explores how PO members are involved in developing digital services, focusing on their general willingness, actual involvement, and associated factors.A nationwide online survey was conducted among members of German POs from August to November 2023. Participants were recruited through more than 300 national POs. Data analysis included descriptive statistics and multivariate logistic regression analyses to examine potential predictors of three involvement variables.Of the 1,334 participants, the majority were female (67.2%) and aged ≥ 50 years (65.6%). While only 22.4% of respondents had been approached by their PO to contribute to digital servicesmost commonly to PO websites focusing primarily on content development -81.2% emphasized the importance of member involvement, and nearly half (48%) expressed willingness to engage. Members volunteering within their PO were significantly more likely than non-volunteers to express willingness (OR = 2.905, 95% CI: 2.163-3.901, p < 0.001) and to be approached by their PO (OR = 5.227, 95% CI: 3.765-7.256, p < 0.001). Additionally, members not engaged in volunteer roles were significantly less likely to agree to such a request (OR = 0.076, 95% CI: 0.032-0.181, p < 0.001). Members with poor self-rated digital skills were significantly less likely to express willingness (OR = 0.235, 95% CI: 0.135-0.407, p < 0.001) or to be involved (OR = 0.070, 95% CI: 0.016-0.300, p < 0.001) than those with strong digital skills. Other factors, such as age, gender, educational attainment, and membership duration, were significantly associated with specific aspects of involvement.The findings highlight a notable gap between the broad willingness of PO members to engage in digital service development and the limited actual involvement opportunities currently provided by POs. This suggests that structured involvement processes may not yet be fully established, leaving substantial potential untapped. To gain a more comprehensive understanding, future research should explore POs' perspectives on the feasibility of member involvement and structural and organizational factors that shape these opportunities.