Attitudes of Australian breast cancer patients toward the secondary use of administrative and clinical trial data

Abstract

Aim: Little is known about the attitudes of Australian patients with a history of breast cancer toward the reuse of administrative health data and clinical trial data. Issues of consent, privacy, and information security are key to the discussion. Cancer care and research provides an opportune setting to develop an understanding of attitudes toward data sharing and reuse in individuals with a history of breast cancer.

Methods: An anonymous, online questionnaire for individuals with a history or diagnosis of breast cancer was distributed by two peak bodies (Breast Cancer Trials [BCT] and Breast Cancer Network of Australia [BCNA]) to their memberships between July 14, 2020 and October 17, 2020. Results were captured in RedCap; data analysis was undertaken using Stata, and a thematic analysis of free text responses was undertaken using NVivo.

Results: One hundred and thirty-two complete responses were received. Twenty-three percent of respondents had participated in a clinical trial, and 12% were currently receiving treatment (chemotherapy, radiotherapy, surgery, or endocrine). Respondents were supportive of the secondary use of de-identified administrative health data and clinical trial data, but showed concern about data security and privacy. Respondents emphasized that the reuse of data should be for improved societal health outcomes, not profit. Many assumed secondary analysis was already undertaken on de-identified administrative health data and clinical trial data.

Conclusions: Respondents were supportive of the secondary use of de-identified administrative health and clinal trial data within the established bounds of good clinical practice and ethical oversight.

Keywords: administrative data; attitudes; clinical trial data; patients; secondary data analysis.