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Citizen-centred EU-EHR exchange for personalised health

Periodic Reporting for period 3 - Smart4Health (Citizen-centred EU-EHR exchange for personalised health)

Reporting period: 2021-01-01 to 2021-12-31

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 third period, and following the previous work and results achieved, focus has been on achieving milestones "IMPLEMENTED" and "REFINED". The work progressed on the identification of user-requirements and criteria, implementation and refinement of the 4Health Platform and 4Health Navigator, field tests within the Citizen Use Cases (CUCs), and data provision for research. In concrete, we progressed in user requirements co-creation and on qualitative validation drawing on the Performance Accountability Table (PAccT). The Informed Consent (IC) for Smart4Health CHDP (Citizen Health data Platform) was reworked into digital version and tested with citizens. A draft of Informed Consent for Smart4health RP (Rsearch Platform) was produced and its assessment and evaluation with citizens was conducted.
In Smart4Health platform implementation, the focus was on launching a productive and stable CHDP system for its usage in Citizen Use Cases (CUCs). The go-live of the CUCs put the overall system into real-life usage. Also, the development of the pipeline for Data Provision for Research, including the data de-identification component, the data harmonization services and the Research Platform was completed. To ensure functionality, quality and security, we continued to engage in end-to-end testing of software components. Also, the platform infrastructure its scalability, reliability and performance were expanded. In User Portal, the work was focused on finalising the prototype of the Smart4Health User Portal, and the validation, testing, and improvement according to requirements from citizen use cases, as well as the realisation of Personalized Health Services. Also, work was conducted on applying accessibility guidelines to existing implementations and finalising the realisation of the CEF building blocks, especially eID. The implementation of the Smart4Health FHIR format for EU EHR exchange of structured data continued.
In Citizen Use Cases, the work was on implement the CUCs in the field and refine the testing phase, especially in what regards the inputs for the development and testing of the supporting technology. Despite COVID-19, the CUCs managed to progress on the implementation of the previously developed and tested infrastructure to support the use cases (software and hardware). The 4HealthPlatform and 4HealthNavigator were verified and implemented in the CUCs, allowing for refinement of CUCs 1-8. The work developed was deeply related with user requirements and performance criteria. Regarding provision of data for research, this period was dedicated to finishing the ELSI requirements and reflecting that in the Data Hosting Agreement. Also, it was possible to move the implementation of data ingesting pipelines to pre-production level and start the measures and implementation of the meaningful of the data to be provisioned as well as validation of the provisioning. Finally, the project progressed and matured communication, dissemination, exploitation and sustainability.
Smart4Health has been especially progressing towards a Citizen-centred design through an interdisciplinary integration of the social sciences and humanities (SSH) perspectives all along the innovation process. Progress is also being made in capacity of data ingestion, normalising and de-identifying real-time and longitudinal data from a great variety of different EHRs.
Smart4Health has been developing and integrating the necessary 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.
Up to end of the project the final set of user requirements and performance criteria is expected together with final versions of Informed Consent and consent language, identifying needs in different language environments and health care cultures. In addition to the already available CHDP, it is expected to bring the process to provision data for research into its technical readiness in an end-to-end fashion, thereby enabling citizens to donate their data. Also, Smart4Health platform and portal will be assessed and validated in all dimensions. The knowledge gained in the composition of the FHIR IG has been shared with the community. The results are and will continue to contribute to clearly identify the potential impacts of the project.
General Concept