A Review of Success and FailureFactors of using Patient-GeneratedHealth Data for Chronically Ill Patients

Abstract: Our population is becoming older and with that, the development of chronic diseasesis is also expected to increase. A chronic illness is a long-term illness which lasts throughout a lifetime, or at least for a very long time. A large part of healthcare resources is already devoted to treating chronically ill patients. These patients are often dependent of both care and medication to maintain a meaningful life. To gain a holistic view of these patients health condition by one/two appointments with physicians yearly is not sufficient in order to conclude a certain health-state. The course of disease for these patients changes daily and require follow-up on disease progression continuously to adapt an appropriate treatment plan. Collecting patient-generated health data (PGHD) facilitates in the process of retrieving moreevidence for better assessment of the disease development. While there is obvious importance and benefit of using of PGHD, this data is not commonly used in healthcare.  Further investigation is needed to understand how PGHD can be more useful. This pilot study provides knowledge of the success and failure factors of using PGHD for mainly chronically ill patients, but can be applied to other patient-groups as well. The aim of this thesis work was to collect information about what suppliers, governmental organizations and healthcare professionals require for using PGHD in healthcare setting in a greater extent in the future. Methods used to gather information were participatory interviews in combination with qualitative interview questions. Pattern recognition has been created through a thematic analysis andcluster mapping. The data collection resulted in four areas of improvement; patient behaviour, healthcare organization, digitized health data and equipment. The result shows overall a positive attitude towards the concept of PGHD by all sectors asked in this project. Stakeholders agree on that PGHD can generate positive outcomes for chronically ill patients. The belief of improving workflow in healthcare with PGHD was also positive. The valuable possibilities generated with PGHD are tailored careflows, improved evaluation of disease status and enhanced quality of care and well-being among others. Additionally, several ongoing projects are taking place, which demonstrate great interest in the area. However, before PGHD can be prescribed by healthcare, studies have to be performed including development of national guidelines for reporting PGHD, building a secure infrastructure and introducing new work routines. Future work will be applying AI-analysis of reported PGHD to facilitate the work of caregivers and development of secure storing solutions for instance with block-chain technology.