Challenges of Health Data Use in Multidisciplinary Chronic Disease Care: Perspective from Heart Failure Care

Abstract

The healthcare sector generates approximately 30% of all the world’s data volume, mostly for record keeping, compliance and regulatory requirements, and patient care. Healthcare data often exist in silos or on different systems and platforms due to decentralised storage and data protection laws, limiting accessibility for health service research. Thus, both the lack of access to data and more importantly the inability to control data quality and explore post-trial (phase IV) data or data with translational relevance have an impact on optimising care and research of congestive heart failure (CHF). We highlight that for some diseases, such as CHF, generating non-traditional data has significant importance, but is hindered by the logistics of accessing chronic disease data from separate health silos and by various levels of data quality. Modern multidisciplinary healthcare management of cardiovascular diseases—especially when spanning across community hubs to tertiary healthcare centres—increases the complexities involved between data privacy and access to data for healthcare and health service research. We call for an increased ability to leverage health data across systems, devices, and countries.