TA5 “Use Cases”

Structured, quality assured individual phenotype and exposure-related health data are generated in clinical trials and epidemiological and public health studies. Clinical trials and (prospective) epidemiological studies are the most appropriate study designs to investigate (1) the onset and dynamics of measurable phenotype profiles and diseases on individual and population level and (2) the efficacy of diagnostic and therapeutic interventions. Access to detailed information on a large and unselected number of participants and patients is pivotal to advance patient risk stratification, to support personalised medicine, to find new interventional options and to improve patient care. Nowadays, even more data become available through large primary data collections (e.g., for cohort studies) and secondary data sources such as disease registries or health insurance data. The sharing and reuse of such data for research purposes are currently limited for several reasons: (1) lack of standardised metadata and methodological diversity in the collection of health information across studies, (2) incomplete knowledge of relevant studies and the nature of data collected in the research community, (3) regulatory, governance, ethical and legal challenges of data access and of bringing data together across populations or data sources and (4) lack of knowledge and skills of potential data users and limitations of data analytical infrastructures to use study data.
While TA2, TA3 and TA6 will develop necessary concepts and services related to data and metadata harmonisation and standardisation, data and metadata repositories, data access and data analyses, the main objective of TA5 is to implement or to at least explore the possibilities to implement these infrastructure components in specific use cases which reflect core needs of the scientific community related to health data research.