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With the contribution of the ICT4Life consortium
The 20th century was characterised by an enhancement of well-being and better economic conditions bringing modifications in lifestyle. Such improvements also led to new risk-factors that could be controlled but not cured, causing an increase in chronic conditions. Health systems, once mainly focused on acute episodes, are now working on the implementation of country-tailored solutions aimed at better responses to the burden of (multiple) chronic conditions.
In recent years, Europe faced important demographic changes affecting the ageing population. As a result, there are almost 10 million Europeans affected by Parkinson’s, Alzheimer’s and other dementias, and the number is forecast to double by 2030, making them a major health challenge. Those people want to live in their own homes but, because of their symptoms, they face difficulties in daily life, both in managing their own care and in living independently.
Increased chronic conditions, multi-morbidity and an ageing population of both the workforce and patients has led to the development ofa new integrated care model at the European and national levels. This model is supported by the development and deployment of innovative information and communication technology (ICT) tools to improve and facilitate the quality and delivery of care in all health settings.
At Member States’ level, most health systems have already moved from a traditional hospital-centric and doctor-centric pattern of care to integrated care in which hospitals work closely with primary care, community care and home-care. Almost all European countries have made efforts in modifying their hospital provision patterns: delivering better services, increasing quality, improving efficiency and productivity. Further actions are directed towards the creation of multi-professional networks and to the involvement of the patient in the pattern of care.
As the literature shows, the presence of a strong ICT system connecting either professionals or professionals and patients is a successful factor for transition from hospital-focused health systems to continuum care-focused health systems. Such factors are crucial to ensure quality of care, especially in times of financial constraints.
Integrated care models address how care services could be coordinated and delivered to deal with people’s continuous care in a more efficient way while considering all stakeholders’ needs and perspectives. To do so, there are several levels of integration. The Triple Integration,1 stated by Simon Stevens, described the different levels needed to address integrated care services depending on the care services and stakeholders involved. That is:
- integration between primary and specialist services to provide health services closer to the patient;
- integration between physical and mental health services to fight against the stigma on mental health;
- integration of health and social services to coordinate the efforts of the different services that support patients.
The participation of patients, care-givers and the community within the care processes has to be added to the dimensions mentioned above, to adopt a people-centred approach also based on their own perspectives and needs as stated in the World Health Organization strategy.
The concept of integrated care is not limited to health services. The rising burden of chronic diseases and of the number of people with complex care needs requires delivery systems that bring together a range of professionals and skills from both the cure (healthcare) and care (long-term and social care) sectors. The concept of integrated care seems particularly important for service provision to the elderly, as elderly patients are often chronically ill and subject to co-morbidities. Thus, patients suffering from Parkinson’s, Alzheimer’s and other dementias could be included in these targets.
In January 2017, HOPE adopted a position paper on integrated care, providing not only an overview of the current situation in Europe but also highlighting the challenges faced by European health systems as well as their differences. In Europe, the situation varies considerably across countries not only because of the demographic differences but also because of health and social systems rooted in different histories and cultures. European health systems are moving away (but not at the same pace) from the ‘treat and cure of acute conditions’ culture to face the challenges posed by the transition to an ageing demographic. Strategies that deal with organisational, financial, delivery and eHealth technology aspects have been adopted at the country or regional level.
This is the context in which the ICT4Life project intends to provide its contribution, and will be discussed below. General description ICT4Life is a three-year project funded under Horizon 2020, the EU Framework Programme for Research and Innovation, with the ambition of providing new services for integrated care employing user-friendly ICT tools, thereby ultimately increasing patients’ quality of life and autonomy at home. To reach this goal, ICT4Life is conducting breakthrough research and radical innovation and will implement the ICT4Life platform. Such a platform will deliver a series of innovative services to patients affected by Parkinson’s, Alzheimer’s and other dementias and also to health professionals and formal and informal care-givers. All solutions are developed following a user-centred methodology and tested in real-life scenarios.
This initiative brings together nine partners representing academia, industry and end-user groups, all committed to improving patients’ lives and advancing Europe’s leadership role in personalised services for integrated care.
The partners of this well-balanced and multidisciplinary consortium are:
- Artica Telemedicina (Spain), which leads the project;
- Polytechnic University of Madrid (Spain);
- Madrid Parkinson’s Association (Spain);
- Netis Informatics Ltd (Hungary);
- E-seniors (France);
- CERTH – Centre for Research and Technology Hellas (Greece);
- 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. Additionally, 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.
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 functionalities. Implementing improvements takes into consideration the required adjustments due to cultural or regional contexts.
The scenarios
A summary of the scenarios are shown in Figure 1: patients’ homes, day care centres and rehabilitation rooms.In the home scenario, personalised training, reminder, communication and rehabilitation services support patients’ empowerment and independent living. The patient is monitored through several sensors that gather real-time data simultaneously and to detect abnormal behaviours. Thus, the patient and his/her health status are constantly monitored while ensuring independent living. When a risky situation is detected, the platform connects the patient with his/her family, care-givers and professionals through friendly tools. This approach contributes to increasing not only the quality of life of the patients but also of care-givers, who are often patients themselves. The platform finally aims to support the decision-making process of the health professionals who use ICT4Life services to monitor the evolution of the patient’s symptoms and medication intake.
The rehabilitation scenario supports the analysis of the patients’ evolution during therapies and while performing exercises. The continuous monitoring helps professionals from the health and social sectors to assess the effectiveness of the recommended therapies and, eventually, to improve the integrated approach to care for people affected by these neurological diseases.
The day-care centre is the scenario in which several patients will be monitored simultaneously over the pilot phase. The system will support care-givers to obtain specific information on the patients’ status. The project technologies will allow collection of patients’ specific data related to their specific symptoms and to establish an exchange of information with professionals, in turn connected to the platform with specific tools.
A continuous process of iterative testing has been designed and the platform functionalities experienced by end-users (patients, care-givers and professionals), combining several social research techniques (including formal testing protocols). The goal, as in previous phases of the co-design process, has been to identify usability improvements and adapting the technology to the users’ needs. The co-creation process has involved most of the ICT4Life multi-disciplinary team, including both users and developers.
This process is taking place simultaneously in three countries (France, Hungary and Spain), in order to address cultural differences through country comparison, and also allowing comparison of patients suffering different disease needs and demands (Parkinson’s disease at different stages and Alzheimer’s disease patients).
The research will also contribute to the analysis of scenarios supported through a method developed by another EU-funded project (SCIROCCO)2 aimed at determinating the strengths and weaknesses of a given geographical region in terms of integration of care. The objective is to ensure the successful and effective scaling-up of the developed platform.
This project has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under Grant Agreement n° 690090. This article expresses the authors’ view and the European Commission is not responsible for any use that may be made of the information it contains.
References
1 Simon Stevens – Chief Executive of NHS England. www.kingsfund.org.uk/audio-video/simon-stevens-nhs-five-year-forward-view (accessed April 2018)
2 www.scirocco-project.eu/ (accessed April 2018)
