Citizen-centred EU-EHR exchange for personalised health

Project Information

Smart4Health

Grant agreement ID: 826117

DOI

10.3030/826117

Project closed

EC signature date 6 December 2018

Start date 1 January 2019

End date 31 October 2023

Funded under

• SOCIETAL CHALLENGES - Health, demographic change and well-being

Total cost

€ 21 781 120,00

EU contribution

€ 21 781 120,00

Coordinated by

UNINOVA-INSTITUTO DE DESENVOLVIMENTO DE NOVAS TECNOLOGIAS-ASSOCIACAO
Portugal

Periodic Reporting for period 5 - Smart4Health (Citizen-centred EU-EHR exchange for personalised health)

Reporting period: 2023-03-01 to 2023-10-31

Summary of the context and overall objectives of the project

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.
21 Key exploitable results identified
12 peer reviewed papers published

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

The project started by focusing on three main activities: development of co-creation environment, development of the 4Health Platform and definition of the Citizen Use Cases. In data donation for research a first mapping of ELIXIR-LU hosting platforms with Smart4Health requirements was made. Communication campaign at CUCs as well as to targeted dissemination activities to policy makers, academic and industrial communities.
Next the project focused on achieving milestones "DEVELOPED" and "TESTED". Work was related with the identification of additional user-requirements and criteria, development and testing of the 4Health Platform and 4Health Navigator and development and setting up of the Citizen Use Cases infrastructure. A PoC of the 4Health Platform was developed and moved into production. User dashboard for selected data was implemented and secured APIs of healthcare provider were defined. Hand-shake protocol for information sharing was put in place. 8 million records were transferred and, with respect to data donation for research, technical mapping between the Smart4Health Research Platform and the ELIXIR-LU hosting solutions was finished. Helpdesk and assistance hub concepts were realised together with definition of education and support infrastructure, including platform, MOOCs and education and training events. In the subsequent phase, the focus was on achieving milestones "IMPLEMENTED" and "REFINED". The work progressed on the identification of additional 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. Productive and stable CHDP system was launched for usage in Citizen Use Cases (CUCs). 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. Work was conducted on accessibility and integration with CEF BB. The 4HealthPlatform and 4HealthNavigator were verified and implemented in the CUCs. In provision of data for research, focus was on finishing the ELSI requirements and reflect that in the Data Hosting Agreement. Closer to the end of the project, the focus was on achieving milestones "ESTABLISHED" and "MATURED". User-requirements and criteria, 4Health Platform and 4Health Navigator, Citizen Use Cases (CUCs), and data provision for research were concluded. Several health days organised. Plan for exploitation finalised and roadmap for platform sustainability concluded. Finally, in the last phase, and with all technical work concluded, the consortium focused in detailing and implementing a plan for sustainability entailing the platform, the services and the community of users.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

Smart4Health focus on a Citizen-centred design through an interdisciplinary integration of SSH perspectives all along the innovation process. Substancial progress was made understanding how users position themselves towards their health data and what they envisage as priority in managing it. A set of user requirements and performance criteria together with Informed Consent and consent language, identifying needs in different language environments and health care cultures was achieved. This work entails insights that are an extremely valuable contribution to health data infrastructures that are capable of real citizen empowerment. Also, Smart4Health platform represents 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. Also, Smart4Health platform and portal were assessed and validated in all dimensions. The knowledge gained in the composition of the FHIR IG as well as many SW components were shared with the community. The consortium was capable of establishing the necessary means to ensure that project results, specially those obtained in the region of Madeira (CUC 8) will remain available to the community after the end of the project by linking to Madeira Digital Health and Wellbeing initiative and support from regional authorities.

General Concept