HHE Neurology supplement 2018 - Page 21

• Maastricht University (Netherlands); • HOPE – The European Hospital and Healthcare Federation (Belgium); • University of Pécs (Hungary). The motivation behind ICT4Life comes from the need to find solutions aimed at developing the concepts of self-care, active patients and integrated care. To reach this goal, ICT4Life is developing, through technological, medical and social research, a radically new approach to integrated care that is being materialised in the ICT4Life platform. People with Parkinson’s, Alzheimer’s and other dementias strive for independence, although they face major difficulties in their daily lives, especially in taking care of themselves. Care- givers also need to be supported in their daily care routines. As the impairment increases, families need to dedicate increased time and mental and physical efforts to their relatives. Health professionals require tools ensuring a better coordination of care which, in turn, guarantee more efficient decision-making processes regarding therapies. This situation poses a challenge for public authorities, policy makers and businesses, especially as it comes at a time of increasing pressure on public budgets and growing demands from older people for care products and services. If this demographic transition is not tackled head-on, it will raise considerable concerns for the sustainability of health systems. The ICT4Life platform represents a solution to face the abovementioned challenge. The ICT4Life objective implements an innovative platform that connects patients, families, care-givers and health professionals through user-friendly tools, using results on emerging technologies. The platform is aimed at facilitating patient empowerment, supporting care-givers and establishing cooperation channels within professionals for integrated care. The ICT4Life platform is based on the use of available sensors, which collect information about the health status of the patient while monitoring his/her movement and evolution of symptoms. Through the platform it is possible to infer if a patient is disoriented, confused, spends too much time immobile or tries to leave the house. Moreover, sensors detect emergency situations such as falls, freezing and festination to alert care-givers and professionals to the need for immediate care. Addition ally, there is an evaluation of therapy-related exercises for the patient through these sensors. To sum up, the ICT4Life platform: • monitors patients in real-time to alarm and call for early intervention; • prevents risk of falls, social isolation, depression, poor well-being and inadequate medication management; • promotes patients’ independence, safety and social involvement; • provides timely support to care-givers, helping them to feel less stressed; • enables information exchange among health professionals for a better coordination of care. 21 HHE 2018 | hospitalhealthcare.com The approach The ICT4Life approach is based on the involvement of end-users’ in the development of the technology. For this reason, end-users’ organisations have participated in the co-creation process since the beginning. This started with the analysis of requirements and functional design and was followed by a process of iterative testing leading to the final pilot phase, all intended to efficiently target the end-users’ needs. Integrated care provision to Parkinson’s, Alzheimer’s and other dementias patients requires the active participation of: • patients themselves, because they are the only ones who know what it is to experience the disease burden; • informal and formal care-givers who provide daily care to patients; • social professionals who support patients and families in their social needs; • health professionals from different specialties focusing on treatment diagnosis and/or rehabilitation. Addressing the priorities of the European Innovation Partnership on Active and Healthy Ageing, the ICT4Life approach merged expertise and knowledge of medical doctors, nurses, social workers, psychologists, physiotherapists, social scientists, and patients as well as programmers and designers. Research methodology The identification of end-users’ requirements has followed a research methodology based on a multi-disciplinary combined approach from computer sciences, medical and social perspectives. A common research methodology has been developed to collect data around the whole project and thus provide a summary of evidence. Key information has been included in a unified research book that enables the comparison of results among different countries, through to considering the cultural differences and observing how the platform is deployed in different contexts. The implementation process is flexible and is adapted according to context. Requisites identification was the first research goal. It was completed using personal diaries of patients compiled during their daily life and feedback of their care-givers, health professionals and social workers, in addition to the still ongoing literature review. This process has established a set of requirements for the technology that has helped the development teams to adapt the ICT4Life system functionalities and interfaces to the end-user’s needs and preferences. Once the first designs and architecture were available, early feedback was gathered from real patients, caregivers and health professionals, using mock-ups of the interfaces in order to address end-users’ specific needs regarding the first version of the technology. At a later stage, once the system was operational, three main scenarios were used for the iterative testing phase of the platform validation. The goal of the whole research process is to gather feedback from each targeted end- user’s profile (patients, care-givers and health professionals), in order to identify possible improvements and also to develop new