Description and Scope
The European Institute for Innovation through Health Data (i~HD) is being formed as one of the key sustainable entities arising from the Electronic Health Records for Clinical Research (EHR4CR) and SemanticHealthNet projects, in collaboration with several other European projects and initiatives supported by the European Commission (see Appendix 4). i~HD has been established as a European not for profit body, registered in Belgium through Royal Assent. It will itself be governed by its member stakeholders, public and private, through an elected Board and officers. It will be financed by a mixture of membership subscriptions, fees from providing services including certification and accreditation, specific project grants and other income from education, training and expert advisory roles.
To become the European organization of reference for guiding and catalyzing the best, most efficient and trustworthy uses of health data and interoperability, for optimizing health and knowledge discovery1.
To enable, coordinate, and accelerate the efficient development and deployment of interoperable and seamless eHealth solutions2 and research strategies, towards achieving best practices and sustainable integrated person-centred health care, to optimize health and wellness in Europe, and beyond.
- Championing harmonised health information and standards for capturing, curating, protecting and exchanging health data in a trustworthy, legally compliant and transparent manner using best practices. This is to enable complete and interoperable health records on individuals and populations to deliver benefits to all stakeholders3 , supporting and guiding the best use of standards and assets for semantic interoperability and privacy protection.
- Providing and/or fostering capabilities to enable better quality health data, and the legitimate sharing and uses of health data, including:
- Semantic interoperability info-structures and assets
- Exchange and research platforms and tools
- Informatics standards and resources to support standards adoption
- De-identified health data repositories
- Research data source catalogues and metadata
- Facilitating, deriving and using intelligence from health data (scientific and clinical intelligence, research, knowledge discovery, service improvement and business intelligence) through advancing the uses of:
- Electronic Health Records4 and Personal Health Records5
- Citizen sourced data
- Mobile health sources
- Social care records
- Disease, device and quality registries
- Reimbursement claims and reporting databases
- Cohort studies and Bio Banks
- Clinical trial and electronic case report forms (eCRF)
- Other potential sources of health related data
- Performing and commissioning quality assessments, and conducting or overseeing quality audits of:
- Health related ICT systems and applications
- Health data6
- Personnel using health data
- Relevant organisational processes
- Building synergy and consensus: acting as a focal point bringing stakeholders together to share experiences, agree common priorities and approaches for maximizing the benefits of good quality and interoperable health data and the trustworthy reuse of health data, working towards convergence and cross-fertilization between:
- Patient associations
- Citizen, family and carer associations
- Health professional associations
- Clinical and informatics academia
- Healthcare providers
- National decision makers
- Third party payers, commissioners
- EHR system and applications vendors
- Medical Device vendors
- Pharma, Bio-tech
- Health data aggregators and consumers
- Standards development organisations (SDO)
- Multi-national decision makers
- Social care providers
- Electronic health (eHealth) competence centres
- Defining and supporting the adoption of best practices in information governance, including ethics, privacy protection, and codes of conduct, relating to the trustworthy use of health data including capture, processing and sharing.
- Defining and driving a cohesive strategy and vision for ICT (eHealth, pHealth, mHealth) supported, person-centred care, wellness and prevention, especially from data and knowledge perspectives.
- Creating awareness and promoting the Institute and its objectives, promoting the value of high-quality health data, and delivering training and education in topics relating to its objectives.
- Ensuring sustainability of the Institute and of initiatives within the health data ecosystem, through business model innovation and value assessment (including health benefits, cost-effectiveness, financial impact, etc.), by developing assessment frameworks and tools, and by collating and disseminating the existing and future evidence of value from catalysing the development and implementation of well-coordinated interoperable eHealth strategies and programmes.
1 Knowledge discovery includes the use of health data to derive local knowledge (for example to determine quality of care) and generalisable knowledge. This knowledge may be derived directly from data, such as data mining, comparative effectiveness research and epidemiology, or using health data to identify patients to participate in research studies.
2 eHealth solutions include software applications, medical devices, algorithms and analytic components, software tools and services, interfaces, repositories, networks and large scale infrastructures and info-structures.
3 These benefits will relate to the care give to individual patients, to the configuration of healthcare and wellness services for populations, and to the reuse of health data for knowledge discovery.
4 An EHR comprises information relevant to the wellness, health and healthcare of an individual, in computer-processable form and represented according to a standardized information model.
5 A PHR is a health record, or part of a health record, for which the subject of care or a legal representative of the subject of care is the data controller.
6 Such audits may, for example, relate to the governance of the capture, usage and communication (sharing) of health data, or to the quality of health data at a given site such as a hospital.