Attitudes towards data access and sharing health data for research: a case study of Australian data custodian perspectives.

Abstract

Background: The effective sharing of health data is critical for advancing public health research and improving health outcomes. Data custodians responsible for managing these data encounter various obstacles that prevent the efficient exchange of this information for research purposes. This study explores specific challenges to effective data custodianship and how they can be addressed to improve data sharing within the Australian health and human services sectors.

Objectives: A case study to explore the complex landscape of data sharing from the perspective of data custodians. This includes identifying legislative complexities and related organisational cultural challenges associated with data requests that accompany the role of a data custodian and suggesting strategies to facilitate data sharing.

Method: Utilising qualitative thematic analysis, semi-structured interviews were conducted to collect detailed perspectives on the practices and challenges of sharing health data from 11 data custodians across nine Australian healthcare organisations.

Results: The study highlighted several common challenges affecting data sharing for research, including legislative hurdles, lack of uniform standards for data access, and inconsistent consent protocols across datasets. Internal organisational factors, such as data request assessment processes, organisational culture, and attitudes towards data sharing, emerged as critical barriers to the efficient sharing of data.

Conclusion: Overcoming data-sharing barriers necessitates a multifaceted approach, requiring clear and consistent legislative frameworks for data access and establishing standards for transparent and efficient request assessment processes.Implications for health information management:Shifting data from a liability to a valuable asset can enhance decision-making, foster collaboration, and drive health sector innovation.