Aims: The potential for secondary data analysis and data sharing in healthcare continues to attract attention with the promise of improved patient outcomes and service provision. For professional stakeholders issues of privacy, data security, and appropriate methods of consent remain of concern. Further, questions about data ownership and professional or academic acknowledgment are important to professional stakeholders. Cancer provides an opportune setting for secondary data analysis; however, little is known about the attitudes of professional stakeholders and healthcare consumers towards the secondary use of administrative health data and clinical trial data.
Methods: A series of semi-structured interviews were conducted with key professional stakeholders (researchers, clinicians, bioethicists, statisticians, lawyers, information technology), August 2018 and April 2020. Interviews were recorded and transcribed verbatim. Nvivo was used for thematic analysis.
Results: Nineteen interviews were conducted with participants from diverse professional backgrounds. The analysis identified four key themes: perceived benefits and limitations; barriers and facilitators; legal considerations; and ethical and moral arguments. While interviewees were generally supportive of the secondary use of data, concerns relating to privacy, consent, and information security were noted, as were structural and logistical barriers. The role of the social contract and the ethical and moral obligation to use data to its full extent, and to the benefit of all, was discussed.
Conclusions: The diversity of views expressed indicates that continued research into attitudes towards secondary data use is required. Increased education and information on the collection and use of data in healthcare should be provided to healthcare consumers and healthcare professionals to help promote the ideals of data reuse in cancer.