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Citizen-centred EU-EHR exchange for personalised health

Periodic Reporting for period 2 - Smart4Health (Citizen-centred EU-EHR exchange for personalised health)

Reporting period: 2020-01-01 to 2020-12-31

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.
Following the work and results achieved in the first year, the second period has been dedicated towards achieving milestones "DEVELOPED" and "TESTED". The work was deeply related with the identification of 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. In addition to this, great attention has been given to disseminate and communicate the project. In term of concrete results here a short overview:
The user engagement exercises were adapted to and conducted in remote settings, resulting in the second specification of user requirements, the process of establishing performance criteria has been refined and adapted, resulting in updates on performance criteria, the informed consent for the Smart4Health platform (CHDP) has been reworked into a digital version and has undergone testing with citizens. Also, first version of the informed consent for the research platform (RP) could be established. In addition, the Performance Accountability Table (PAccT) has been established, its process defined, and is in collaborative use.
A proof of concept of the 4Health Platform is developed and productive, technical test implementation of eTranslation CEF building block is ready, functionality of the secure and reliable data ingestion is fully covered through SDKs, data controller certified by the German Federal Office for Information Security, end-to-end encryption approach with latest stage encryption technology is met by design and initial version of platform governance established and first process rolled out. CEF eID specifications are defined and documents are filed for approval, upload / import capabilities for Patient Summary implemented, technical requirements and EU IPS standards examined, upload / import capabilities for healthcare provider datasets, for medication plan, for all relevant Integrating the Healthcare Enterprise (IHE) profiles implemented (XDS.b profile), for Unique Device Identification (UDI) information and for wearables including smart watches, smart devices / textiles / shoes implemented. User dashboard for selected data is implemented and secured APIs of healthcare provider are defined. Also, transfer of images via FHIR, API integration to proven OSS HL7 Converters and PDF upload are implemented. Hand-shake sharing for information sharing, technical interface for data sharing and data push and technical infrastructure for tracking of sharing interactions are in place.
The Citizen Use Cases have been progressing to implement data ingestion, contribute for requirements collection and user engagement. Also the interoperable solutions to support Health and Wellbeing data collection in the Citizen Use Cases have been further matured and enhanced with additional features to answer requirements. Specifically, 8 million records transferred, hospital infrastructure and possibilities to connect assessed (FHIR), treatment, prevention, occupational and travel schemas ready for data injection.
With respect to data donation for research, technical mapping (data provisioning flow, service components identification) between the Smart4Health Research Platform and the ELIXIR-LU hosting solutions is finished. Legal/ethical requirements for the data donation to ELIXIR are aligned and initial implementation of data ingestion pipelines is finished.
Finally regarding communication and dissemination, special attention has been given to the realisation of the helpdesk and assistance hub concepts, definition of education and support infrastructure, including platform, MOOCs and education and training events. Also, several disseminations and communication activities were conducted.
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.
Further developments will continue to contribute to the potential impacts of the project along its duration. Also, a clear understanding of the possibilities will also be available once the field tests start.
General Concept