Personalized e-Health for Elderly Self-care and Empowerment V. Jiménez-Mixco1, M.F Cabrera-Umpiérrez1, A. Esteban Blanco1, M.T. Arredondo Waldmeyer 1, D. Tantinger2 , S. Bonfiglio3 1
Life and Supporting Technologies. Universidad Politécnica de Madrid, Avda Complutense 30, Ciudad Universitaria. 28040 - Madrid (Spain) {vjimenez, chiqui, aesteban, mta}@lst.tfo.upm.es 2
Fraunhofer Institute Fraunhofer-Institut for Integrated Circuits IIS, Am Wolfsmantel 33. 91058 Erlangen .Germany.
[email protected] 3
FIMI s.r.l, via S. Banfi 1. 21047 SARONNO,
[email protected]
Abstract. This paper describes the OASIS Health monitoring system, a personalized e-health solution specifically designed for the elderly population in the context of OASIS EU funded project, with the objective to empower the elderly so that they meet their social, emotional and psychological needs, take care for their long-term condition, and prevent further illnesses or accidents. The system integrates four main areas that cover the main aspects of interest related to the health management of the users at their own homes: electronic health record personalization, remote health monitoring, education & coaching, and alerting & assistance.
Keywords: personalization, electronic health record, self-care, empowerment, eHealth, elderly.
1 Introduction The role of self-care in the management of long term conditions is crucial for effective high quality health care of patients. More and more, patients with chronic diseases and elderly people that need continuous health surveillance are able to live in their own home and surroundings with help from relatives and health professionals. In order to enable patients to receive a preventative home based self empowered care, a complete system must be provided; it must help them to manage and monitor their daily health status, and needs to be connected to the professional medical system at the hospital. This concept that involves the actions taken towards the possibility of not
being continuously attached to the hospital environment is often called “patient empowerment” [1]. It implies a re-distribution of power between patients and physicians and therefore an increase of the individual’ autonomy to make informed decisions and personally handle their condition for their own health and well being. This paper presents the approach adopted in Oasis Health Monitoring System (OHMS), which has been developed within OASIS European project [2]. OASIS explored the potential of ICT in all aspects of daily life of the elderly to create ambient intelligence environments that empower them so that they meet their social, emotional and psychological needs, take care for their long-term conditions, and prevent further illnesses or accidents. The OHMS represents an effort to advance in a new generation of telecare services for the elderly devoted to –going beyond the monitoring of the health status- providing them with an easy-to-use system to personally manage their health status and assuring their well-being by means of a constant remote control by professional caregivers.
2 Methodology The User-centred-design concept has been applied throughout the complete design and development cycle through the OPAF (OASIS Participatory Analysis Framework) methodology [3], a participatory design process specifically created within OASIS framework. Developers were driven by the outcomes of these extensive activities including interviews, surveys and discussions about use cases in various user forums, usability tests, and workshops carried out to involve all the stakeholders (i.e. older adults, informal & formal caregivers, and third parties such as the health care and emergency support service providers). The iterative consensus building among key stakeholders and user groups’ representatives enabled the clustering of the functionality of the OHMS in four main areas that cover the main aspects of interest in the area: electronic health record personalization, remote health monitoring, education & coaching, and alerting & assistance. Besides the work performed with users, the main efforts of the development process were focused on customization. Not only must the system fulfil the needs of the elderly in general, but of each specific user, mainly when the subject of the application is the health status. For that purpose, the definition and management of the user’s electronic health record (EHR) constituted the central element of the application. The solution for managing the user’s health profile implements a distributed system of XML files [4], focusing on personalization, data security and synchronization, and thus ensuring that the stored information is always valid and up-to-date in both sides of the communication channel (elderly and professional clients). The EHR contains critical information related to different aspects of the user’s health and implements a pre-defined protocol to automate (transparently to the user) the processes needed for the management of the user’s health status, thus adding intelligence to the system, e.g. setting the vital and activity signs that should be regularly controlled, frequency of measurements, or ranges of parameters that define the urgency of response in case of emergency.
3 Results The proposed solution has been deployed in a distributed way with a client-server approach using Java within Eclipse and Netbeans frameworks, OSGI architecture and Web-service technologies. On the client side, the elderly user application’s UI has been carefully designed following the guidelines and the adaptation framework [5] specifically defined in the context of OASIS that take into account different conditions of users such as age, mobility, vision or computer literacy. The elderly are provided with a tablet PC and a set of Bluetooth sensors (3 commercial EC-marked and 3 research prototypes) that will be used to record details of the user’s biomedical parameters (SpO2, Heart rate, glucose, etc.) and daily activities (Inactive, Walking, Running, Falling, etc.). All measurements are stored in the user’s health record, so that any abnormal situation is detected and sent to the alerting module. The Health Coach module is intended to engage and motivate the elderly with regard to the management of their health status by providing educational content to make them aware of the benefits of a healthier lifestyle and how important it is the adherence to the therapeutic plan prescribed by the doctor to prevent a degeneration of the health conditions. Finally, the system alerts and notifies about an important event, which can be either the receipt of a new message from the doctor, a change in the medication treatment, or, the most important, the warning about a potential dangerous situation. All the information is managed and controlled remotely by the medical doctor on the server side using the Medical Center application, which completes the loop of the concept “e-health for empowerment”. It enables the medical doctor not only to perform a continuous tracking of the user’s health status, but to be proactive and make decisions on the performance of the user’s application by setting the medication treatment and monitoring, defining the educational content and giving them recommendations just as if the user was present at the hospital for a regular visit. The main innovation of the OHMS compared to other telecare systems is that, being integrated in OASIS: a) on one hand the system is able to exchange useful information of other domains (e.g. nutrition, environment, brain skills, transport, etc.) with any other application of the platform through the user’s profile, giving the health professional enriched data about the context of the user, and b) on the other hand, external healthcare providers will be able to integrate their services in the platform and connect them to the OHMS with a very small effort. The application prototype has been preliminary tested with 10 Spanish users aged between 55 and 83 in order to get feedback from them related to the usability of the application. The tests, performed by LST-UPM in Madrid, were based on the “Think aloud” and the “System usability scale” techniques [6, 7]. Users were given some time to “play” with the prototype and explore its functionality. By verbalizing his thoughts, the test user enables the developer to understand how he views the computer system. After this time, they filled a System Usability Scale questionnaire related to the complexity, easiness of use and consistence of the system. The analysis of the results gave an acceptable usability score with an average user satisfaction index of 73.5 (on a 1-100 scale). With focus on statements and comments of the participants, the results are being taken into account for further improvements of the application.
4 Conclusions The European Union is investing thoroughly for the research and development of new healthcare technologies to help empower the patients and specifically the older adults so that they become able to personally take care of their health status and prevent further illness or accidents. This paper presents the work carried out to provide a solution for making the self-care and patient empowerment an effective tool for the management of long term conditions. A personalized e-Health system for empowerment has been developed carefully customized for elderly users, including four main areas that enable comprehensive health management: health profile definition & personalization, health remote monitoring, health coach and alerting & assisting. The system is currently being fully tested in OASIS pilots in several countries in Europe (Italy, Romania, Bulgaria, Germany, United Kingdom and Greece) with hundreds of users, and the results will be extensively analyzed for further improvement of the system. Acknowledgments. We would like to thank the whole OASIS Project Consortium This work was partially funded by EU in OASIS project (FP7, ICT-2007-215754).
References 1. Lodewijk Bos et al. Patient 2.0 Empowerment. International Conference on Semantic Web & Web Services SWWS08, Hamid R. Arabnia, Andy Marsh (eds), pp.164-167,2008 2. Bekiaris, E. and Bonfigli. The OASIS Concept. S. Universal Access in HCI, Part I, HCII 2009, Lecture Notes in Computer Science 5614., 2009. ISBN: 978-3-642-02706-2. 3. Lindsay, S. et al. OPAF: OASIS Participatory Analysis Framework. OASIS 1st International Conference. Florence, November 2009. 4 A.Esteban et. al. Distributed and synchronized users’ profile management for Ambient Assisted Living. III WTHS, Valencia, December 2011. 5. V.Melcher et. al. OASIS HMI: Design for Elderly – A Challenge . Advances in Understanding Human Performance. Ed. by Valerie Rice.Print ISBN: 978-1-4398-3501-2. 6. Gould, J.D and Lewis, C. Designing for usability: key principles and what designers think. Communications of the ACM, 28, pp. 300-311. 1985. 7. Brook, J (1996). “System Usability Scale” SUS - A quick and dirty usability scale. Available online: www.usabilitynet.org/trump/documents/Suschapt.doc 8. V. Jiménez-Mixco et al. The OASIS Health monitoring system. OASIS 1st International Conference. Florence, November 2009. 9. J.L Monteagudo Peña and O. Moreno Gil. e-Health for Patient empowerment in Europe. Informes, Estudios e investigación 2007. Ministerio de Sanidad y Consumo, Instituto de Salud Carlos III. 10. Patient J. Clemensen and J. Rasmussen. Empowerment and New Citizen Roles through Telehealth Technologies. eTELEMED 2011: The Third International Conference on eHealth, Telemedicine and Social Medicine.
