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Citizen-centred EU-EHR exchange for personalised health

Periodic Reporting for period 4 - Smart4Health (Citizen-centred EU-EHR exchange for personalised health)

Reporting period: 2022-01-01 to 2023-02-28

Smart4Health: Building today a healthier tomorrow
Smart4Health aims at empowering EU Citizens with an interoperable European Electronic Health Record (EHR) exchange that supports EU citizens to be active participants in managing their own health. The key objective of Smart4Health is to place the citizen in the centre of decisions with regard to their own healthcare by enabling the possibility of sharing health data with different clinicians, medical centres, local and international societies, for research activities as well as to engage directly with healthcare providers. The 4HealthPlatform allows citizens to collect, store, manage, access and share their own health and healthcare data, through an easy-to-use, secure, constantly accessible and portable health data and services prototype within the EU and beyond. The 4HealthPlatform data layer connects with the 4HealthNavigator portal for services and applications to provide advanced personalised health services that are accessible anytime and anywhere. Citizens are able to upload data (from EHRs over self-collected data to work- health related data) in the use design cases MyHealthView, MyTime and MyWork. Also, they are able to share data with health care professionals in situations when reliable health information is essential to ensure efficient health care as well as with other persons of trust such as family members (MyTrusted, Mob.E.Health). Finally, citizens willing to support science can provide their data to the scientific community (MyScience). The technological elements are developed in a co-creation process drawing on eight Citizen Use Cases. These cases cover all aspects of citizens’ active role in using the 4HealthNavigator to access the 4HealthPlatform. Citizen and professional user engagement aims to understand and align user needs for a mutually valuable solution and to ensure positive user experience and system usability. Citizens from different national, cultural and institutional health-related contexts are able to interact with and test the different steps of health data management at home, at work, while traveling, or during leisure and sport activities. Smart4Health follows a truly multidisciplinary approach with a project team constituted by eighteen beneficiaries from eight different European Union member states and the United States of America, including ICT developers, hospitals, social sciences researchers, physiotherapists, nurses, informal caregivers, regional government, research centres, universities and SMEs. Smart4Health will contribute to a positive impact on EU citizens’ health and wellbeing, for building today a healthier tomorrow.
During the fourth period, and following the previous work and results achieved, focus has been on achieving milestones "ESTABLISHED" and "MATURED". The work on the identification of user-requirements and criteria, implementation and refinement of the 4Health Platform and 4Health Navigator was concluded as well as the field tests within the Citizen Use Cases (CUCs), and data provision for research. In concrete, a final set of user requirements was achieved via engagements conducted with citizen and professional users as well as a refined narrative description of the Use Design Cases. Also, digitised broad consent for provision of data for research was finalised and points for improving were identified.
In Smart4Health platform implementation, the focus was on maintaining a productive and stable CHDP system for its usage in Citizen Use Cases (CUCs). The Citizen Health Data Platform (CHDP) has been in stable use through the Citizen Use Cases (CUCs), and also the Research Platform (RP) was connected end-to-end for its productive use in a citizen-driven data donation scenario. The activities in the period focused on the refinement and documentation of the platform infrastructure, and continuous improvements resulting from the test and validation and feedback from the field.
In Citizen Use Cases, the objective was to continue and conclude the implementation of the CUCs in the field, with special focus in providing inputs for the assessment and validation of the supporting technology. Thus, in the fourth reporting period of the project, the main focus was the assessment and validation of the developed infrastructure to support the use cases (software and hardware) as well as user requirements. In this regard, the work developed was deeply interrelated with the assessment of the user requirements and performance criteria. COVID-19 pandemic has affected some activities causing some delays in some of them. The project also developed substancial work in communication and dissemination having organised several health days in different locations and adapting their format to the different audiences. Finally, the plan for exploitation was finalised and the roadmap for platform sustainability was concluded. In this regard, the project extension will particularly focused in putting in practice a set of actions to progress on sustainability.
Smart4Health has been especially focused on a Citizen-centred design through an interdisciplinary integration of the social sciences and humanities (SSH) perspectives all along the innovation process. In this regard, substancial progress was made understanding how users position themselves towards their health data and what they envisage as priority in managing it. In this regard, a final set of user requirements and performance criteria together with final versions of Informed Consent and consent language, identifying needs in different language environments and health care cultures was achieved. This work entails insights that are considered to be an extremely valuable contribution from the project to health data infrastructures that are capable of real citizen empowerment.
Also, the Smart4Health platform, both CHDP and RP, represent a unique result towards health data interoperability across Europe, with project having ingesting data from multiple health providers, normalising and de-identifying real-time and longitudinal data from a great variety of different EHRs. In this regard, Smart4Health developed and and integrated technology to move to patient-centered, preventive wellbeing and healthcare services, changing health data management models from institution-based to citizen-centred, enabling citizen access and control of own health data. Also, the opportunity to provide data for research opens a wide set of possibilities from research to innovation helping the citizen and the community as a whole. This possibility was demonstrated in an end-to-end fashion, thereby enabling citizens to donate their data. Also, Smart4Health platform and portal were assessed and validated in all dimensions. The knowledge gained in the composition of the FHIR IG has been shared with the community. In the next phase, the project will concentrate in putting in practice a set of actions to progress on sustainability.
General Concept