Social factors associated with the development of e-health literacy: A mixed-methods study among patient organization members and representatives

The increasing digitalization of healthcare systems presents both opportunities and challenges for patients. A key challenge lies in cultivating e-health literacy, defined as the capacity to locate, comprehend, appraise, and use digital health information and services. This study employs a mixed-methods approach to investigate social and structural factors perceived as shaping patients’ capability to use digital health services. A mixed-method approach guided the design, data collection, data analysis, and synthesis. This included semi-structured interviews and an online survey to corroborate findings and enhance credibility. The objective of the study was to examine the perspectives and dispositions of members and representatives of patient organizations regarding digital health services identifying key factors associated with e-health literacy. Findings indicate that respondents view social factors as crucial. Motivation to engage with digital health services is seen as a pivotal factor to shape the development of e-health literacy. However, motivation is not solely an individual trait; it is shaped by social contexts and trust in digital systems. Ensuring the highest standards of data security and transparency is imperative for cultivating this trust. Furthermore, patients must feel a sense of autonomy regarding their personal health data to engage confidently with digital health services. Structured learning environments, offered by social actors such as governments, patient organizations, and health insurance providers, also play a crucial role. These insights are relevant for practitioners in healthcare and public administration. To develop e-health literacy, it is imperative to establish inclusive learning opportunities, ensure data protection, and cultivate patient empowerment. Government agencies, healthcare providers, and insurance companies should collaborate with relevant stakeholders to design and implement supportive measures that reflect patients’ lived realities. This approach can help ensure that all individuals are equipped to participate meaningfully in a digitalized healthcare environment.Author summary: In our study, we looked at how people can better understand and use digital health services. As healthcare becomes more digital, patients need confidence when using online tools, apps or platforms to manage their health. To understand what helps or makes this difficult, we conducted an online survey and interviewed members and representatives of patient organizations. We found that motivation is important, but does not depend only on the individual. People are more willing to use digital health services when they trust them, believe their personal data is protected, and feel in control of their own health information. Learning opportunities can also help people build needed skills, especially when these are offered by trusted organizations such as public institutions, health insurers, or patient organisations. Our findings suggest that improving e-health literacy is not just a technical issue. It requires support from healthcare providers, public institutions, and organizations involved in healthcare and patient support. This includes secure, accessible digital sytems and services, guidance from healthcare professionals that helps build trust, and structured involvement of patient organizations in developing educational and participatory opportunities. Such support can help ensure that everyone can benefit from digital health tools, regardless of their starting point.