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eStandards Report Summary

Project ID: 643889
Funded under: H2020-EU.3.1.

Periodic Reporting for period 2 - eStandards (eHealth Standards and Profiles in Action for Europe and Beyond)

Reporting period: 2016-05-01 to 2017-07-31

Summary of the context and overall objectives of the project

The eStandards project is a coordination and support action led by standards development organizations and eHealth stakeholders to support large scale adoption of eHealth in a sustainable and cost-effective way, by advancing eHealth interoperability through global alignment of standards.
The vision of eStandards is a global eHealth ecosystem where people have navigation tools for safe and informed health care, where interoperability assets fuel creativity, entrepreneurship, and innovation. This global eHealth ecosystem thrives on a new type of standards, namely eStandards that are fit for the digital age and that nurture digital health innovation. With eStandards the global eHealth ecosystem will strengthen Europe’s voice & impact in the digital health market and enable co-creation and trusted provider-user relationships in the development, delivery and deployment of eHealth solutions.

The concrete measurable objectives of the project supported by individual WPs are as follows:
#1: SDOs joining up with eHealth stakeholders to build consensus on eHealth standards.
#2: Roadmap for alignment, iterative consolidation, and broad adoption of eStandards.
#3: Contribute to the eEIF by resolving ambiguities & embedding quality management.
#4: Support Large-Scale eHealth Deployment: regional, national, and cross-border.
#5: Support Global Cooperation (EU/US MoU) & wide adoption of eHealth standards.
#6: Explore the socio-economic aspects of eHealth Standards.
#7: Align across PHC-34 to deliver a EU value proposition for sustainability & growth.

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 eStandards white paper “the case for formal standardization in large-scale eHealth deployment” advocates the use of open tools and data, the creation of user forums and educational activities supporting the eStandards life cycle from the identification of needs, to base standards, to use cases, testing, deployment, to feedback and maintenance. Distinct and complementary perspectives and needs are highlighted for: (1) health systems – government and regulators that need rules to abide by for sustaining and innovating the provision of healthcare services, public health reporting and analysis, as well as communication and coordination across health systems; (2) workforce in need of communication and coordination of care; dissemination and availability of knowledge; (3) citizens seeking active involvement in health maintenance and decisions; navigating the health system (or systems) they are involved in; (4) the eHealth market to create opportunities for innovative health and IT services.
As our society becomes more data intensive it is critical that decisions are based on high quality data. The eStandards project has contributed to the discussion on quality management in clinical content as well as in interoperability testing and certification of eHealth systems as part of the European eHealth interoperability framework. Best practices in interoperability from Europe and throughout the world were collected and published as a compendium guideline that can help young interoperability practitioners. The EU/US roadmap for cooperation in eHealth interoperability was the backdrop for activities that forged synergies among standards development organizations and implementers. Socio-economic aspects of eHealth interoperability were explored with work on the language for user-vendor interaction that embodies ‘co-making’ in trust, collaboration and long-term engagement and a study on the cost-effectiveness of standards-based interoperability.
Finally, the evidence-based eStandards roadmap – dedicated to Henk Bakker, a Personal Health Record Ambassador – proposes a digital health compass for trust and flow of digital health data. The compass aims to engage eHealth stakeholders speaking to their needs, in their language, in order to align, iteratively consolidate, and adopt eStandards that use digital tools throughout their life cycle. The eStandards roadmap methodology, applicable to strategic areas like rare diseases and chronic disease management, advocates the development, delivery, testing, deployment, and maintenance of standards sets that are properly adapted to a dynamic healthcare system through a constant flow of interaction between three types of activities in the CGA model: (C) Co-creation between all relevant stakeholders to make it real using standards; (G) a supportive flexible governance system to make digital health scale toward large-scale deployment; (A) flexibility to adapt and align as needs and requirements change for sustainability and growth.
In order to take the eStandards work forward, it is argued that individual health innovation programmes seek out the support of the standards organisations in their jurisdiction to help them select the appropriate tools for standards-based eHealth development, delivery and deployment. Targeted projects may include national, European and global patient summary projects and the reference networks for rare diseases. To this end the national eHealth competency centres and the national member organisations of global standards developing organisations should undertake joint actions to establish the relevance of the eStandards recommendations within their specific context. At a European level the coordination of eStandards work across Europe is a clear objective of the collaboration around eHealth standards as promoted by the eHealth Network. The Joint Initiative Council on Global Health Informatics Standardisation has been an active contributor to the eStandards wo

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)

The ambition of the eStandards project as noted in the description of work is “Re-establish SDOs as the authority and shepherd of high quality widely-adopted standards that advance cost effective sustainable interoperability.“ Realizing this ambition requires that SDOs become more aligned and perhaps refocused on the needs of the stakeholders, and even more importantly attuned to leaving the safe comfort zone of academic discussion on technical standards, for the challenging zone of considering technical, semantic, organizational, and legal interoperability in tandem. The vision of eStandards is that of a global eHealth ecosystem where people have navigation tools for safe and informed health care interoperability assets fuel creativity, entrepreneurship, and innovation and were eStandards nurture digital health innovation, strengthen Europe’s voice & impact, and enable co-creation and trusted provider-user relationships. [Figure 11: eStandards roadmap provides a digital health compass for health systems, workforce, market, and citizens to navigate the digital health transformation underway].
Perhaps the highest impact from eStandards besides in roadmap creation CGA methodology and the digital health compass, was with the eStandards lifecycle model, which urges standards organizations to engage with stakeholders in every step of the way [Figure 12: eStandards is part of a movement, urging Standards organizations to get out of their comfort zone and engage with users every step of the way.]

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