e-Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2020

Attitudes towards data sharing and secondary analysis in cancer; preliminary results of a questionnaire in researchers and/or healthcare professionals (#336)

Elizabeth Hutchings 1 , Belinda Butcher 2 3 , Phyllis Butow 4 5 6 , Frances M Boyle 1 7
  1. Northern Clinical School, University of Sydney, Sydney, NSW, Australia
  2. 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: Secondary data analysis and data sharing in healthcare has the potential to influence patient outcomes and service provision. Issues of privacy, data security, and appropriate methods of consent attract strong debate. For researchers and healthcare professionals, reuse of data also raises questions about data ownership and professional or academic acknowledgement. Cancer provides an opportune setting for secondary data analysis, however little is known about the attitudes of Australian and New Zealand researchers towards the reuse of administrative and clinical trial data.

Methods: An anonymous, online questionnaire for individuals with a research or professional interest in breast cancer or prostate cancer or melanoma was distributed by peak bodies (BCT, BCNA) to their membership from 14 July 2020.

Results: By 12 August 2020 36 complete responses were received. 93.3% of respondents were Australian. Medical oncologists (31.7%), surgical oncologists (14.6%), and oncology research nurses (17.1%) were all represented, of whom 90.2% were involved in research. Support for secondary data use was high, with 84.6% of respondents strongly agreeing that deidentified health administrative data should be used for other reasons including service planning and improved patient care. 75% believed that clinical trial data should be shared with other researchers to answer other research questions at the completion of the trial. 44.4% indicated they have been asked to share their data in the last three years, of which 6.3% did not share. 13.9% had requested data from another researcher, of which 20% did not receive data. 58.3% believed that a formal citation of data providers or funding agencies in all disseminated work using the data was an appropriate acknowledgement of data sharing. Free text fields demonstrated varied attitudes towards data reuse underscoring the need for continued research.

Conclusions: Health professionals and researchers support data sharing but barriers remain.