JMIR Publications

ABSTRACT

Background:

Digitalisation of public sectors and health sectors worldwide are fundamentally changing health systems. With implementation of digital health services in health institutions a focus on digital health literacy and use of electronic patient reported outcome (ePRO) tools have become more evident. In Denmark public institutions are using digital tools for different purposes aiming to create a universal public digital sector for everyone. However, this digitalisation risk further marginalisation of disadvantaged citizens. Therefore, more knowledge is needed about citizens’ and patients’ digital practices and experiences with digital health services.

Objective:

This study aims to examine experiences with public digital health services from the perspective of patients and citizens with the aim of gaining insight into and a deeper understanding of how digital health services and ePRO tools are experienced.

Methods:

We used a qualitative design and took a hermeneutic approach as the point of departure. Semi-structured interviews were recorded in person or on the phone in the autumn of 2022. A total 36 citizens participated and 31 of these were hospitalised or formerly hospitalised patients in a department of neurology in a hospital in Denmark. The text from each transcribed interview was analysed using manifest content analysis, as described by Granenheim and Lundmann.

Results:

The analysis provided insights into five different categories connected to the overall use of digital tools and ePRO in healthcare systems: social resources as a digital lifeline; possessing the necessary capabilities; big feelings as facilitators or barriers; life without digital tools; answering PRO for the sake of others. Our findings showed digital tools were experienced differently, and specific conditions were important for the possibility of digital practice, including having access to social resources; possessing physical, cognitive, and communicative capabilities; feeling motivated, secure, and comfortable; and understanding purposes behind digital services. Participants who lived up to these prerequisites had positive experiences using digital tools in the healthcare system, while others who did not, experienced challenges and in some cases felt left out.

Conclusions:

Experiences with digital tools and digital health services are complex and multifaceted. Engagement in digital practices for the examined population require access to continuous assistance from own social network. If patients do not meet requirements digital health services can be experienced as excluding and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges. Answering ePRO questionaries may require assistance and clear communication of purposes. To make sure digitalisation do not create inequality in health it is necessary for health intuitions to be aware of differences in digital health literacy, and to focus on simplifying communication with patients and next of kin, as well as finding flexible solutions for the disadvantaged.