Enhancing the value of care to people: how innovations meet end-users’ needs in integrated care contexts. A joint initiative presented at ICIC 2018.
In 2015, the European Commission funded five projects under the H2020 call SC1-PHC25. The aim of the call was to develop innovative solutions to improve and advance home-based integrated care for people suffering from chronic conditions, including co-morbidities. The solutions produced by the five funded projects – Polycare, CONNECARE, ICT4LIFE, CAREGIVERSPRO-MMD and ProACT – address this call by increasing citizens’ independence and quality of life, allowing them to remain at home supported by families, care-givers and health professionals, thanks to digital integrated care tools.
Synergies have been created among the projects and joint initiatives have been proposed to exchange information on the work put in place and to learn more on the solutions developed. One of these was the organisation of a workshop in the context of ICIC 2018, aimed at bringing together the achievements of the projects and their contribution to the challenges posed by integrated care. The workshop focused on highlighting the common ground of the projects, providing input on four shared dimensions that will be better explained in the sections below. The focus stood on highlighting the co-creation process of value-based solutions set up on end-users’ experiences.
Enhancing the value of care to people
The first common dimension identified consists in the technology approach development, which is based on strong co-design research processes involving end-users, to ensure the solutions offer a personalised model of care. These innovative solutions are now involved in proof of concept trials in sites across the EU.
ICT4Life project, for example, adopts a people-centred approach to achieve the Triple Aim: enhancing patient experience, improving population health, and reducing costs. It promotes the involvement of end-users’ in the development of the technology from the beginning. End-user’s organisations took part in the co-creation process with the analysis of requirements and functional design which was followed then by a process of iterative testing leading to the final pilot phase, all intended to efficiently targeting the end-users’ needs.
Polycare responds to the challenge of enhancing value of care for chronic elder patients by developing an integrated organisational methodology which combines social and medical approaches to improve the state and quality life of patients without the need of going to the hospital. Collaborative software tools and platforms for healthcare and professional care-givers are design to support integrated care at home. Providing a non-intrusive monitoring system based on wearables to better follow-up patients’ evolution is also an essential added-value of the project, which aims at better understanding patients’ needs, motivating and empowering their self-health management by means of gamification.
CONNECARE follows, from the very beginning of the project, a co-design approach that use iterative cycles. In particular, a PDSA approach (Plan, Do, Study, Act) is adopted. The PDSA cycle is a systematic series of steps for gaining valuable learning and knowledge for the continual improvement of a product or process. According to this iterative co-design solution, 3 six-month PDSA cycles have been performed so far. In so doing, selected users (both professionals and patient) have been able to test the system providing continuous feedback that has been used to improve the current solution and to give rise to the next cycle. The first PDSA cycles have been evaluated considering the following indicators: patients and professionals’ engagement and perspectives; new care models and supporting ICT; safety, ethical, and legal aspects; maturity of the technology.
Professionals’, carers’, and patients experience while using the devices
The technologies have been developed involving end-users during iterative design and testing approaches, to better respond to citizens, health community and social care needs. End-users provided positive feedback, but the complexity of multiple diseases management rose challenges, especially for patients suffering from dementia or acute conditions. Initial outcomes have also highlighted the positive influence of previous ICT knowledge on the acceptance of the new tools. Overall early findings indicate patients reported to better self-manage their conditions, care-givers felt reassured and more autonomous, while health professionals experienced improvements in coordination of care.
For example, with the aim to achieve high level of user satisfaction, the consortium of CAREGIVERPRO-MMD performed a usability study aiming to fine tune the platform. The usability of the platform was measured through the perceived user-friendliness, usefulness and satisfaction of end-users (people living with dementia, caregivers and health professionals) from all the pilot sites of the project. In user’s overall evaluation of the platform, caregivers and health professionals were more than 80% satisfied with the platform, while people living with dementia considered the usefulness and ease of use of the platform to be increased after one week of using it.
In the case of ICT4Life, the caregivers underlined the app provides a good monitoring of the patients’ health conditions by sharing of information with health professionals and as the Library may help them to know better the symptoms and the diseases of their loved ones. They also appreciated the calendar and the list of medicines reminding them the patients’ treatment and appointments. According to the patients’ feedback, the cognitive games on the Smart TV app are easy to use and can also foster interaction by playing them with other users and they are patients’ favourite components of the ICT4Life system. The health professionals argued that ICT4Life can help them to save time and money in terms of communication with the people involved in the patients’ care. However, they warned about the fact that the ICT4Life system must be used by all the people involved in the care of a patient to be really useful and functional.
Methodologies and processes to improve integrated care system efficiency and health outcomes
Improved integrated care systems rely on data sharing and continuous communication flow among the actors involved in the care of patients. Information sharing supports care efficiency which led in turn to cost-effective treatments and coordination of care among social and health actors. For example, ICT4Life enables to share patient information among end-users, medical and social data, tracking evolution information, treatment and medication information, documents and images which enable that all end-users involved in the care process of a patient share the same information.
The monitoring of disease evolution and symptoms through the interaction of the patients with the platform allows personalised and adapted care-plans. Patients have a better understanding of their conditions and decide whether they need to visit care centres. The reduction of emergency interactions with no medical reason supports the analysis of reduced Interventions value for professionals and home hospitalization improvement value for care institutions. Real-time, proactive and early interventions prevent adverse events while promoting patients’ independency and safety.
Effectiveness of care and better health outcomes are supported by the adaptation of systems to local contexts, which is crucial given the differences in terms of health and social care provision in the European regions.
For example, behind ProACT there is a novel artificial intelligent learning and data analytic system called InterACT created by IBM, which analyses each person’s use of the system over time and better guides their self-management. The system also enables risk stratification to identify which person are most in need of support. It has been designed from concept using a strong person centric co-design methodology and the latest approaches in human behaviour change and human computer interaction. ProACT has been developed with strong ethical, data protection and security measures in place, this includes being GDPR compliant. The flow of data through the ProACT platform starts and ends with the person with multimorbidity and their care support.
Cost-efficiency of integrated care ICT based solutions and their exploitation
The costs of care are attributed to informal care (unpaid care provided by family members or others), direct costs of social care (provided by community care professionals and in residential home settings) and direct costs of medical care (the costs of treating dementia and other conditions in primary and secondary care). In high income countries, the direct costs of social care (paid home care and care in care homes) and the indirect costs of informal care provided by unpaid family caregivers contribute in similar proportions to total costs, while in low and middle-income countries, the cost of informal care predominates given the lack of structured formal care sector services. The informal caregiver adopts medical, assistive and social roles and for this reason, caregivers’ interventions are effective in keeping people living with dementia at home longer and in delaying the nurse home admission.
The projects propose solutions aimed at addressing the challenge of developing cost-effective systems in several dimensions:
- Hospital admissions should be reduced and care-givers supported in performing their tasks thus allowing more effective care provision;
- The platforms contribute to better coordination of care and real-time communication among the stakeholders involved, allowing a more effective tasks distribution.
However, cost-effectiveness analysis will be developed after pilots as it will be based on real data.
The flexibility of the platforms enables cost-effective personalisation to other scenarios after project ends, and especially adaptation to other diseases and domains. The adaptability will help to improve real practice deployment of integrated care and will contribute to transfer new methods and technologies to other regions in the EU and beyond.
The provision of self-management interventions empowers patients and their care-givers to take control of their situation, by improving their quality of life and by allowing them to share experiences with people in the same situation.
In the case of ICT4Life, the chosen structuration in a modular implementation at different layers (low-level, high-level and service modules) facilitates the inclusion of new services or the connection with third party systems in a cost-effective way. Additionally, the Open API (Application Programming Interface) implementation will have positive impact on future exploitation and will constitute a cost-effective way of adapting the platform to the individual needs of potential clients. The modules functionality is able to address personalisation of its services, and content delivery to specific user needs, whether this relates to their roles (care-givers/professionals/patients) or to the severity and type of disease.
Isabella Notarangelo & Laurie Andrieu
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