Implementing a Cloud Based Method for Protected Clinical Trial Data Sharing.
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ABSTRACT:
SUBMITTER: Luthria G
PROVIDER: S-EPMC6954005 | biostudies-literature | 2020
REPOSITORIES: biostudies-literature
Publications
Implementing a Cloud Based Method for Protected Clinical Trial Data Sharing.
Luthria Gaurav G Wang Qingbo Q
Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing 20200101
Clinical trials generate a large amount of data that have been underutilized due to obstacles that prevent data sharing including risking patient privacy, data misrepresentation, and invalid secondary analyses. In order to address these obstacles, we developed a novel data sharing method which ensures patient privacy while also protecting the interests of clinical trial investigators. Our flexible and robust approach involves two components: (1) an advanced cloud-based querying language that all ...[more]
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Project description:ObjectiveThe 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).ResultsEighty 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.DiscussionResults 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.ConclusionTo 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.
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