Patient-generagted Data and Information Literacy in Shared Decision-making (WP3) 

In the multidisciplinary work package 3, information literacy of patients and healthcare professionals is studied from the perspectives of patient safety, health and human services informatics, and social psychology. The work package explores the use of information in decision-making, focusing on the practices of patient-generated data, and the ways in which decision-making practices promote treatment adherence. The main focus is shared decision-making in treatment of epilepsy and MS patients. 

International research collaboration stands out in this work package and has enabled the translation and validation of established scales in order to study shared decision-making and information literacy among Finnish samples. The first part objectives have included 1) a scoping review of the meaning and content of patient-generated data in epilepsy care decisions, 2) applying a measure for shared decision-making (SDM-9) as a part in a multimethod study design, 3) applying the readiness and enablement index for health technology (READHY) among MS and epilepsy patients. In addition, the studies in this work package are being carried out in collaboration with Associate Professor Patricia Dykes (Brigham and Women’s Hospital, Harvard Medical School, Boston, USA), which has allowed her to visit Kuopio and vice versa for a research visit to Boston, USA. 

One of the aims is to produce information to support the development of digital decision-making tools. This is achieved by modelling user acceptance, readiness and information literacy in association to the adaption of digital healthcare services.