EHTEL Community Position Paper: Encouraging citizens to master accessing and using their own health data via Interoperable Records

EHTEL members welcome the recent initiative of the European Commission towards a “Recommendation to establish a Format for a European Electronic Health Record (EHR) Exchange”. It aims to facilitate cross-border interoperability and secure access to electronic health records for seamless exchange and use of health data in the EU.

Throughout 2017, while the EU launched a number of public consultations around digital health and care at European, national, and regional levels, EHTEL members consistently emphasised three key issues:

  • Citizens’ empowerment and their online access to health and care data.
  • Continuity of care and interoperable service implementation.
  • Digital transformation management and governance.

For the upcoming recommendation, EHTEL welcomes that the Commission shares relevant planned content of the upcoming communication and seeks the input of the wider EU Stakeholder Community. EHTEL has learned from the key messages developed by the European eHealth Stakeholder Group and has contributed to this inspiring dialogue since October 2018.

Our further response is guided by the three aims of the recommendation:
 
 

For strategies and legislative access

EHTEL encourages EU-based coordination and support for national implementation, testing, certification, dissemination, monitoring. These are imperative to leverage an improvement in European citizens’ experience of quality of care across the Union.

 

For evolution of common technical specifications

EHTEL is reminded of the truism of “Inventing a new standard to unify 14 incompatible standards ends with 15 incompatible standards”. Hence, we advocate an “incremental” approach on data formats, interfaces, infrastructures, security, and identification to enable fast service innovation.

  • Having started from data formats for unplanned care like patient summaries, data in full support of continuity of care will widen the scope and enhance the sustainability of supporting the health and care needs of the population: Already nowadays, patients using regularly routine health care in another member state seem to outnumber the persons in need of emergency care.
  • Seeing the example of telemedicine services, medical imaging seems to always be a frontrunner in cross-border digital health services: imaging data are today by definition digital and are low-hanging fruits also in cross-border health data exchange.
  • For the architecture, EHTEL endorses a federated approach to accessing multiple distributed data sources and joining them into a unified, platform-neutral, user experience.
  • Furthermore, architecture and services should account for already evolving technology trends like storing medical data on mobile devices in addition to cloud-based infrastructures or establishing WhatsApp-like, however highly secure, communication services.

 

For working between Member States, stakeholders and European Commission

EHTEL proposes a participatory approach, starting from full data transparency and including the widest possible range of citizen and patient data, e.g., wellness data, which seems in the best interest of stakeholders.

  • The priority of interoperable patient data management must be use case driven, following stated needs and in support of care processes.
  • Existing standardisation results, like well-defined minimal datasets for disease and case management of chronic conditions, should be utilised to optimise synergies and benefits.
  • Data donorship as well as complete opt-out must be the available and directly manageable consent options. The first option would allow people to serve – as data donors – the common good and other patients, e.g. those with the same condition. The second option would provide citizens and patients with the widest range of choices to keep the use of their data as limited as possible (if they so wish).
  • Digitisation of health and care repositions interoperability. Interoperability is no longer something nice to have for smooth interactions: the success of the digital transformation of health and care transforms interoperability into an ethical principle.
  • Consequently, core activities on developing interoperable solutions from clinical and semantic standpoints need to be better known to and supported by civil society.

 

Next steps

With its specific interest in interoperable electronic health records, data exchange, standards, and interoperability, EHTEL is a partner in projects like InterEHRoperate, PROGRESSIVE, and DigitalHealthEurope.
 
To get involved in these activities or for additional information please feel free to contact us.
 
Scroll down to the resources section and download the Position Paper “Towards an incremental approach to let citizens master the access to and the use of their health data via Interoperable EHRs”.

Resources

  • Towards an incremental approach to let citizens master the access to and the use of their health data 1 April 2019 PDF*
    Download