Data Sheet 1_Between willingness and practice: a nationwide survey of 1,334 German patient organization members on user involvement in digital service development.pdf

IntroductionAs 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.
MethodsA nationwide online survey was conducted among members of German POs from August to November 2023. Participants were recruited through 300 national POs. Data analysis included descriptive statistics and multivariate logistic regression analyses to examine potential predictors of three involvement variables.
ResultsOf 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 services — most 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.
ConclusionThe 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, as well as structural and organizational factors that shape these opportunities.

引言
随着医疗保健领域数字化转型持续推进，患者组织（Patient Organizations, POs）等关键参与主体正将自身活动与服务适配至数字化形态。本研究聚焦患者组织成员参与数字化服务开发的相关议题，重点考察其普遍参与意愿、实际参与程度及相关影响因素。

研究方法
本研究于2023年8月至11月期间，针对德国患者组织成员开展全国性线上调查，通过300家全国性患者组织招募参与者。数据分析涵盖描述性统计与多因素logistic回归分析，用以探究三类参与变量的潜在预测因子。

研究结果
本次调查共纳入1334名参与者，其中绝大多数为女性（67.2%），年龄≥50岁者占比65.6%。仅22.4%的受访者曾被所在患者组织邀请参与数字化服务开发，最常见的场景为患者组织网站建设，且主要聚焦内容创作；但81.2%的受访者认可成员参与的重要性，近半数（48%）的受访者表示愿意参与相关工作。
在患者组织内担任志愿者的成员，相较于非志愿者，表达参与意愿的概率显著更高（优势比（Odds Ratio, OR）=2.905，95%置信区间（Confidence Interval, CI）：2.163~3.901，p<0.001），且被所在患者组织邀请参与的概率也显著更高（OR=5.227，95%CI：3.765~7.256，p<0.001）。此外，未担任志愿者角色的成员，同意此类邀请的概率显著更低（OR=0.076，95%CI：0.032~0.181，p<0.001）。
与自我评估数字技能较强的成员相比，自我评估数字技能较差的成员表达参与意愿的概率显著更低（OR=0.235，95%CI：0.135~0.407，p<0.001），且实际参与相关工作的概率也显著更低（OR=0.070，95%CI：0.016~0.300，p<0.001）。年龄、性别、受教育程度、会员时长等其他因素，也与参与行为的特定维度存在显著关联。

研究结论
本研究结果显示，患者组织成员普遍具备参与数字化服务开发的意愿，但当前患者组织提供的实际参与机会却十分有限，二者间存在显著差距。这表明规范化的成员参与流程尚未完全建立，仍有大量潜力未被发掘。为更全面地理解这一问题，未来研究应探索患者组织对成员参与可行性的看法，以及影响此类参与机会的结构性与组织性因素。