Potilaan tuottaman tiedon käyttö digitaalisissa terveyspalveluissa – epilepsiaa sairastavien henkilöiden kokemuksia

Authors

• Iida Kuronen Department of Health and Social Management, University of Eastern Finland, Kuopio
• Anna Vahteristo Department of Health and Social Management, University of Eastern Finland, Kuopio
• Milla Rosenlund Department of Health and Social Management, University of Eastern Finland, Kuopio

DOI:

https://doi.org/10.23996/fjhw.178937

Keywords:

epilepsy, patient-generated health data, care process, information management, digital health

Abstract

Digital health services enable patients to actively participate in monitoring their care and generating information related to symptoms, lifestyle, and well-being. Although international and national policies emphasize the importance of patient-generated health data (PGHD) in patient-centered care, previous research suggests that their integration into clinical decision-making remains unsystematic and often invisible from the patient’s perspective. This study aimed to describe how individuals with epilepsy experience the reception, integration and use of the PGHD they generate within their care process. The data were collected through three semi-structured focus group interviews (N = 8) conducted between December 2022 and March 2023. The transcribed material was analyzed using inductive content analysis, with particular focus on how PGHD are incorporated into the care process.

The findings indicate that PGHD were used inconsistently. They supported self-management and interaction during clinical consultations, whereas their connection to treatment decisions often remained unclear. When the data were acknowledged, participants reported a stronger sense of involvement. However, when previously recorded data were not revisited or did not inform decision-making, the significance of producing such data became uncertain from the patient’s perspective. Participants also described interruptions in information transfer between units and systems, as well as practices in which PGHD were not systematically addressed. The results highlight the need to develop practices that make the reception and integration of PGHD more transparent and consistent within clinical decision-making.