“I Just Assumed This Was Already Being Done”: Canadian Patient Preferences for Enhanced Data Sharing for Precision Oncology
Strategies for secured data sharing should anticipate and mitigate the risks that patients perceive. Participants supported enhancing timely research capability while ensuring safeguards to protect patient autonomy and privacy. Our study informs the development of data-governance and data-sharing frameworks that integrate real-world and trial data, informed by evidence from direct patient input.
Authors
- Anna Hermansen (ORCID: https://orcid.org/0000-0002-9836-5205)
- Robert Cook‐Deegan (ORCID: https://orcid.org/0000-0002-8251-4237)
- Yvonne Bombard (ORCID: https://orcid.org/0000-0002-9516-4539)
- Deirdre Weymann (ORCID: https://orcid.org/0000-0002-3072-5657)
- Dean A. Regier (ORCID: https://orcid.org/0000-0001-8876-0511)
- Cheryl Ho (ORCID: https://orcid.org/0000-0002-5922-3984)
- Morgan Ehman (ORCID: https://orcid.org/0000-0002-0343-7115)
- Holly Longstaff (ORCID: https://orcid.org/0000-0002-1662-0832)
- Samantha Pollard (ORCID: https://orcid.org/0000-0002-3070-2092)
- Chiquita Hessels
- Timothy P. Hanna (ORCID: https://orcid.org/0000-0003-3228-6042)
- Emanuel Krebs (ORCID: https://orcid.org/0000-0002-6590-8728)
- Tania Bubela (ORCID: https://orcid.org/0000-0002-0807-2899)
- Howard J. Lim (ORCID: https://orcid.org/0000-0002-5814-714X)
- Steven J.M. Jones (ORCID: https://orcid.org/0000-0003-3394-2208)
Institutions
- St. Michael's Hospital (CA)
- University of British Columbia (CA)
- Provincial Health Services Authority (CA)
- Simon Fraser University (CA)
- University of Toronto (CA)
- Queen's University (CA)
- Canada's Michael Smith Genome Sciences Centre (CA)
- Unity Health Toronto
- Arizona State University (US)
Publication Details
- Journal
- JCO Precision Oncology
- Published
- 2024-08-01
- DOI
- https://doi.org/10.1200/po.24.00184
- Citations
- 1
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 0.54
Funders
- Government of Ontario
- University of Toronto
- National Institutes of Health