Supporting Stakeholder Needs by Ceding Control: The Benefits of Listening to End-Users Anthony P. Glascock, Ph.D., David M. Kutzik, Ph.D. Department of Culture and Communication Drexel University Philadelphia, PA 19104 Abstract—This paper reports on the progressive design process and actual use and evaluation in situ of an informatics system—the Home Care Informatics System— that transmits information obtained by home based pervasive health care systems to caregivers and clients in a timely manner and easily usable format. Since 2006, three versions of the system have been tested in a series of studies with care provision organizations in the United States, the United Kingdom and the Netherlands. Findings from the studies have driven the development of the different iterations with the result being a customized model of pervasive health care that relies on the needs of the end-users, rather than the goals of the developers. Barriers encountered during the testing, that appear to be generalizable to the successful adoption of pervasive health care systems in general, are discussed and possible solutions suggested. Keywords-informatics; care provision; health care records; behavioral monitoring I. INTRODUCTION One of the greatest challenges facing the integration of pervasive health care technologies in general, and home based monitoring specifically, into health care practice is transmitting the information obtained by these systems to caregivers and clients in a timely manner and easily usable format. Although a growing number of home based pervasive health care systems has been developed in the last decade— vital signs, behavioral/lifestyle, environmental [1, 2, 3]—the development of technologies, i.e., informatics, that translate the resultant data into usable information and transmit this information to end users—health care professionals, emergency responders, clients, family members—has lagged behind [4, 5, 6]. In fact, informatics is most often ignored completely in the development of the Home Based Monitoring Systems (HBMS) technology, with the prevailing assumption being that if the technology can provide the data, the end-users can figure out what to do with it. Thus, wide spread adoption of the home based systems has been slow and the full potential of these various systems unmet [7, 8, 9]. This paper reports the progressive design process and actual use and evaluation in situ of one such informatics system: the Home Care Informatics System (HCIS). The first iteration of the HCIS was developed in 2006 and in the last four years three separate iterations have been used within seven different care delivery organizations in three countries—the United States, the United Kingdom and the Netherlands. As of December 31, 2010, the HCIS, in one of its iterations, has been used with over 300 HBMS installations for periods of six months to over two years. Although at present the HCIS has only been used with behavioral/lifestyle monitoring systems, it is designed to be used with any home based system and can be configured to be accessed on any smart mobile device. II. THREE STAGES OF DEVELOPMENT A. Stage 1—2006-2007 The HCIS was initially conceived of and developed as a research tool, rather than an informatics system that could be used in the actual delivery of care. In 2006, we had begun working with our sixth care organization as part of the Caring Home Study which was a comparative study of how QuietCare ® 1 functioned as a passive emergency response system within different care delivery models [8, 10]. Up until we began to work with this particular care organization, we had relied primarily on anecdotes (case studies) to understand how QuietCare ® was used to help provide information to care 1 The QuietCare ® system uses a sensor array in the home to collect data on the following everyday activities: 1) wake up time; 2) meal preparation; 3) medication adherence; 4) overnight toileting; and 5) general activity. In addition, the system monitors the ambient temperature in the residence and provides ―possible fall‖ notification. The data are translated into actionable information and displayed on a PIN secure web site that can be accessed by formal and/or informal caregivers [10]. PervasiveHealth 2011, May 23-26, Dublin, Republic of Ireland Copyright © 2012 ICST DOI 10.4108/icst.pervasivehealth.2011.245997