PERISCOPE: Personalized and contextualized information in self-management systems for chronically ill patients

There is mounting concern that the healthcare sector will not be able to handle the increasing number of chronically ill patients, despite the fact that treatments for chronic diseases are becoming more effective. It is becoming necessary to seriously consider self-management as a means to reduce the anticipated gap between the demand and the delivery of care. Evidence is also growing that self-management intervention such as self-monitoring and decision making, leads to improvements in health outcomes and health status and increases patient satisfaction. Self-management empowers the patient with control over his care process and thereby his daily life, and enhances self-determination and autonomy. The main pre-requisite to participate in and control one’s own care process is that the patient learns more about the illness and relevant treatment options, understands health information to make informed decisions, and engage in activities that promote and maintain one’s health status. Patients with chronic illnesses are using the Internet to manage their information needs. A new health consumer identity is emerging with more information demands and expectations. It is therefore important that the information and communication facilities of self-management systems address these issues. These self-management systems need to: a) be tailored to the person’s situation; b) take into account the patient’s level of health literacy and understanding of his health problem (cognitive capabilities); and c) be persuasive and as concrete as possible. In other words, information needs to be personalized and contextualized so that patients not only understand the health information but also are able to become and remain active participants in their care process. The Dutch government supports patient empowerment and ensures that the necessary information and instruments will become available. It has published ten requirements of the e-Citizen Charter, a standard for e-Government written from the citizen’s perspective. Two requirements related to the field of information exchange, service delivery and policy participation are relevant here: requirement number 4 “Personalized Information” where the citizen is entitled to receive appropriate information tailored to his needs, and requirement number 10 “Involvement and Empowerment” where the citizen is invited to participate in decision-making and to promote his interests. The PERISCOPE project focuses on innovation of ICT components in ICT-based self-management systems. PERISCOPE aims at determining how ICT-based personalization and contextualization of information, and the dialogue between user and system should be designed and implemented in order to enhance self-management skills for the chronically ill patients, in particularly regarding life-style changes. Needs assessment and requirements will be carried out and will result into the development of ICT-based personalization and contextualization demonstrators. The web-based applications are used as intervention in an experimental study. This study consists of a multi-method approach, using the communication model of Te’eni and of Human Computer Interaction methodologies and principles. This approach includes a Randomized Controlled Trial (RCT) for manipulating features of personalization and contextualization. The RCT is complemented by a qualitative study which assists in understanding the impact of the different interventions at the individual user level. An existing web-based self-management application focused on nutrition and food consumption (www.dieetinzicht.nl) is used to build the personalized and contextualized demonstrator. This website has a rich and validated contents and has various possibilities for personalization and contextualization. Targeted users groups are patients with chronic renal conditions and patients with metabolic syndrome, both needing advices on food consumption. Outcome measures from the RCT will give information about the effects of personalization and contextualization of information on the patient's understanding for life-style management. The results will be translated into preliminary guidelines on designing functionalities of personalization and contextualization of information for self-management systems in order to accommodate various types of users with chronic conditions. Existing design principles and methodologies of websites supporting self-management will be included into these guidelines. Besides in the ‘ICT-research oriented’ PERISCOPE project, the website www.dieetinzicht.nl will also be used in the ‘disease management oriented’ SMILING project of the LUMC that will also be submitted within this ZonMw program. SMILING focuses on the effectiveness of web-based coaching of patient with obesity in general practice. The project coordination will be such that the recruitment of patients via general practitioners will avoid interference between the two studies.