PATIENT-GENERATED DATA AND INFORMATION LITERACY IN SHARED DECISION-MAKING (WP3)
Professor of Neurology, chief physician, Kuopio University Hospital, University of Eastern Finland
Neurologist, M.D., Terveyskylä/Aivotalo
Information literacy is connected to patients’ possibilities to participate in shared decision-making and to produce accurate data concerning their health information. We define information literacy as understanding of information and the ability to seek, assess and use that information effectively for decision-making. Further, we see patients and health professionals not only as users but also as providers of information. We focus on how the patient is able to identify and describe the necessary information for care decision-making in both digital and live/face-to-face patient-professional encounters, and how health professionals identify the need for patient-generated data and use that data. Patient-generated data is a key in enabling the integration of patient preferences and values in clinical decision-making.
What we do
We examine patients’ and health professionals’ information literacy as well as views and experiences of shared decision-making.
We study the information needs of epilepsy patients and health professionals in terms of shared decision-making and patient-generated data.
We describe the current use of patient-generated data in epilepsy management and extend the concept of information literacy to the patients’ ability to produce information through digital health services.
We create an information model and a scalable digital tool for supporting patient participation and shared decision-making in digital care pathways.