Australian general practitioner perceptions to sharing clinical data for secondary use: a mixed method approach

Abstract

Objective The potential for data collected in general practice to be linked and used to address health system challenges of maintaining quality care, accessibility and safety, including pandemic support, has led to an increased interest in public acceptability of data sharing, however practitioners have rarely been asked to share their opinions on the topic. This paper attempts to gain an understanding of general practitioner’s perceptions on sharing routinely collected data for the purposes of healthcare planning and research. It also compares findings with data sharing perceptions in an international context. Materials and methods A mixed methods approach combining an initial online survey followed by face-to-face interviews (before and during COVID-19), designed to identify the barriers and facilitators to sharing data, were conducted on a cross sectional convenience sample of general practitioners across Western Australia (WA). Results Eighty online surveys and ten face-to-face interviews with general practitioners were conducted from November 2020 – May 2021. Although respondents overwhelmingly identified the importance of population health research, their willingness to participate in data sharing programs was determined by a perception of trust associated with the organisation collecting and analysing shared data; a clearly defined purpose and process of collected data; including a governance structure providing confidence in the data sharing initiative simultaneously enabling a process of data sovereignty and autonomy. Discussion Results indicate strong agreement around the importance of sharing patient’s medical data for population and health research and planning. Concerns pertaining to lack of trust, governance and secondary use of data continue to be a setback to data sharing with implications for primary care business models being raised. Conclusion To further increase general practitioner’s confidence in sharing their clinical data, efforts should be directed towards implementing a robust data governance structure with an emphasis on transparency and representative stakeholder inclusion as well as identifying the role of government and government funded organisations, as well as building trust with the entities collecting and analysing the data.

Physicians’ attitudes towards secondary use of clinical data for biomedical research purposes in Germany. Results of a quantitative survey

“…They even reported to protect their patients’ data by documenting differently. According to the literature, trust in data users seems to be a vital facilitator for secondary use [ 7 , 23 , 25 ] as well as a trustworthy governance structure and oversight bodies, e.g. use and access committees [ 15 , 26 ].…”

Community views on the secondary use of general practice data: Findings from a mixed‐methods study

“…Finally, although community members may have specific concerns about sharing general practice data, the findings also suggest that GPs can play a central role as trusted agents who can build patients' confidence in the secondary use of general practice data. Although the provision of holistic, comprehensive and continuous care through general practice ideally positions GPs to fulfil this role, organisational constraints, lack of time and GPs' concerns about data sharing will need to be addressed if GPs are to do this 59–62 …”

“…Although the provision of holistic, comprehensive and continuous care through general practice ideally positions GPs to fulfil this role, organisational constraints, lack of time and GPs' concerns about data sharing will need to be addressed if GPs are to do this. [59][60][61][62]…”

Data sharing implementation in top 10 ophthalmology journals in 2021

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