Design of an Internet-Based Disease Management System for Chronic Heart Failure

Licentiate thesis, 2008

Chronic diseases are one of the most challenging health problems in the world, and their burden on society is increasing. Managing these diseases using eHealth solutions could prove very beneficial, both in terms of economic costs and quality of life for patients. However, reaching these goals require knowledge in how to create distributed disease management systems for chronic diseases. In the project Care@Distance the aim is to acquire knowledge on how to use eHealth in order to improve treatment compliance in chronic diseases, improve possibilities for personalized care, alert about deteriorating health on an individual patient level, obtain acceptance among users (both care providers and patients), and finally introduce eHealth-based disease management systems into standard treatment procedures. This thesis covers one of these aims; designing for acceptance among users, mainly patients, but also care personnel. As a first step, the user group has been limited to only include patients with chronic heart failure, and the nurses connected to them. However, expanding general findings and experiences to other disorders should not cause any difficulties. Both the design process and the evaluation of two prototype systems will be covered in this thesis. The intention of the prototype systems was not to create a technically advanced and innovative system, but to produce a tool for attaining new knowledge about the issues related to introduction of eHealth-based disease management systems in Swedish health care. Both systems are described, the evaluations of the first prototype system are presented, and the results are discussed. Two patient related evaluations and one nurse survey have been performed, and the results indicate that the simple prototype system could be possible to transform into a solution suitable for use in the home of patients. Both the patient evaluations and the nurse survey also give insight into important issues to consider when designing an eHealth-based disease management system for chronic diseases. Especially important is the knowledge that one of the largest challenges will be handling of the information overflow related to regular collection of patient data. Future work includes evaluation and development of the second prototype system. The development of the prototype includes decision support for managing large amounts of patient data, and also increasing mobility of the system. Furthermore, additional measurement methods could be included in the prototype system in order to include special cases of patients, or other disorders.