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 work and is keen to take its findings further on a global scale.
