a systematic scoping review of the domains and innovations in secondary uses of digitised health-related data

Abstract

Background: Substantial investments are being made in health ­information ­technology (HIT) based on assumptions that these systems will save costs through increased quality, safety and efficiency of care provision. Whilst ­short-term ­benefits have often proven difficult to demonstrate, there is increasing interest in achieving benefits in the medium and long term through secondary uses of ­HIT-derived data. Aims: We aimed to describe the range of secondary uses of HIT-derived data in the international literature and identify innovative developments of particular relevance to UK policymakers and managers. Methods: We searched nine electronic databases to conduct a systematic scoping review of the international literature and augmented this by consulting a range of experts in the field. Results: Reviewers independently screened 16,806 titles, resulting in 583 ­eligible studies for inclusion. Thematic organisation of reported secondary uses was ­validated during expert consultation (n = 23). A primary division was made between patient-identifiable data and datasets in which individuals were not identified. Secondary uses were then categorised under four domain headings of: i) research; ii) quality and safety of care provision; iii) financial management; and iv) healthcare professional education. We found that innovative developments were most ­evident in research where, in particular, dataset linkage studies offered important ­opportunities for exploitation. Conclusions: Distinguishing patient-identifiable data from aggregated, de-identified datasets gives greater conceptual clarity in secondary uses of HIT-derived data. Secondary uses research has substantial potential for realising future benefits through generating new medical knowledge from dataset linkage studies, developing precision medicine and enabling cross-sectoral, evidence-based policymaking to benefit population-level well-being.