Linking healthcare databases – promise and practicalities

Abstract

Healthcare databases—clinical results, outcomes, administrative and population data—can yield great value for research, safety and quality monitoring, and yet are often considered inaccessible for privacy, technology or legal reasons. Accessing patient level data that is linked across databases and jurisdictions promises a capacity to examine influences on the cause, diagnosis and treatment of disease. Secure technologies are available to help collect data from genomics to environmental influences, to send data, analyse and visualise, helped by high performance computers and broadband. This promise is tempered by the practicalities of work practice in the clinical sphere, protecting privacy, addressing intellectual property and the need to fund data collection as a routine part of clinical care. BioGrid is a federated system of linked patient level clinical, laboratory and genetic data sets across multiple sites and diseases. The data are physically located across jurisdictions within independent hospitals and research organisations, and with authorisation can be combined, searched and queried over the Internet in a de-identified format. This presentation highlights the possibilities of using data linkage as well as the practical issues of data collection, privacy protection, intellectual property management and the critical success factors to making it happen. Healthcare databases—clinical results, outcomes, administrative and population data—can yield great value for research, safety and quality monitoring, and yet are often considered inaccessible for privacy, technology or legal reasons. Accessing patient level data that is linked across databases and jurisdictions promises a capacity to examine influences on the cause, diagnosis and treatment of disease. Secure technologies are available to help collect data from genomics to environmental influences, to send data, analyse and visualise, helped by high performance computers and broadband. This promise is tempered by the practicalities of work practice in the clinical sphere, protecting privacy, addressing intellectual property and the need to fund data collection as a routine part of clinical care. BioGrid is a federated system of linked patient level clinical, laboratory and genetic data sets across multiple sites and diseases. The data are physically located across jurisdictions within independent hospitals and research organisations, and with authorisation can be combined, searched and queried over the Internet in a de-identified format. This presentation highlights the possibilities of using data linkage as well as the practical issues of data collection, privacy protection, intellectual property management and the critical success factors to making it happen.