e-Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2021

Attitudes towards data sharing and secondary analysis in cancer; results of two questionnaires in professional stakeholders and healthcare consumers (#281)

Elizabeth Hutchings 1 , Belinda E Butcher 2 3 , Phyllis Butow 4 5 6 , Frances M Boyle 1 7
  1. Northern Clinical School, University of Sydney, Sydney, NSW, Australia
  2. School of Medical Sciences, University of NSW, UNSW Sydney, NSW, Australia
  3. WriteSource Medical Pty Ltd, Lane Cove, NSW, Australia
  4. Department of Psychology, University of Sydney, Sydney, NSW, Australia
  5. Centre for Medical Psychology & Evidence-Based Decision-Making (CeMPED), Sydney, NSW, Australia
  6. Psycho-Oncology Co-Operative Research Group (PoCoG), University of Sydney, Sydney, NSW, Australia
  7. Patricia Ritchie Centre for Cancer Care and Research, Mater Hospital, North Sydney, NSW, Australia

Aims: Healthcare collects significant amounts of data which can be leveraged through secondary data analysis to provide insights into treatment patterns, disease presentations, and health service usage. This research aimed to improve understanding of attitudes of researchers/clinicians (HCP) with an interest in cancer and healthcare consumers (HCC) with a diagnosis of cancer, towards the secondary use of health administrative data (ADM), collected during an individual’s interaction with the health system, and clinical trial (CT) data.

Methods: Two anonymous, online questionnaires were developed for HCPs or HCCs diagnosed with breast cancer or prostate cancer or melanoma. Data was captured in REDCap; free text responses were analyzed thematically and data analysis was undertaken using Stata (V16.1, StataCorp LLC, Texas). This study was approved by the University of Sydney Human Research Ethics Committee, Sydney, Australia (Approval Number: 2020/001).

Results: Respondents (51 HCPs and 136 HCCs) showed strong support for the ideals of data sharing in cancer, particularly where data is used for reasons of beneficence. Key differences between respondent groups included:

  • higher support for the inclusion of de-identified data in registries or databases by HCCs;
  • higher levels of support for linking de-identified clinical trial data by HCCs; and
  • similar rates of concern for data security, but HCCs showed less concern about data privacy.

Conclusions: HCC and HCP respondents were supportive of sharing and secondary analysis of de-identified ADM and CT data. Healthcare data by nature is sensitive and attitudes towards its secondary use are highly individualized; further research about attitudes towards data sharing and secondary use to support increased data sharing in cancer is required. This should be undertaken in a larger cohort of respondents (HCC and HCP), those who undertake basic research (HCP), and in a younger, more diverse HCC cohort who may not have previously participated in a CT.