Aim: Secondary data analysis and data sharing in healthcare has the potential to greatly influence our understanding of diseases, further medical research, and improve service provision; all of which lead to improved patient outcomes. There are many barriers, both perceived and real, towards the reuse of health data. Concerns regarding privacy, data security, and trust are central, as is finding methods of consent reflective of healthcare consumer preferences. Cancer provides an opportune setting for secondary data analysis; however little is known about the attitudes of Australian healthcare consumers towards the reuse of administrative and clinical trial data.
Methods: We developed an anonymous, online questionnaire for individuals with a diagnosis of breast cancer, prostate cancer or melanoma. The questionnaire link was distributed by peak bodies (BCT, BCNA) to their membership from 14 July 2020.
Results: By 12 August 2020, 87 complete responses were received. All respondents had breast cancer: 91.2% had completed treatment and 18.6% had participated in a clinical trial. Support for secondary data use was high, with respondents agreeing that de-identified health administrative data should be used for other reasons, including service planning and improved patient care (90.7%), disease control (79.4%), improved patient outcomes (94.8%). 66% assumed that deidentified health administrative data was already being used for other reasons. Most respondents agreed that clinical trial data should be used for further research (95.1%) and that it should be shared with other researchers to answer other research questions at the completion of the trial (96%). 89.1% agreed that consent for clinical trial data reuse and sharing should be part of the original consent process. Free text responses demonstrated varied attitudes towards data reuse, underscoring the need for continued research.
Conclusions: Australian consumers support secondary use of administrative and clinical trial data.