Cancer Patients Rarely Asked Their Views on Generative AI in Their Care, Review Finds

An international team that included Flinders University researchers has found that only a handful of studies have asked cancer patients, survivors and caregivers what they think about generative AI being used in their care. The scoping review screened 2,441 records and found just 32 studies that examined the topic, and was published in the European Journal of Cancer.

People affected by cancer were generally favorable when generative AI improved the accessibility and readability of health information, but most of the 32 studies focused narrowly on providing cancer information or simplifying clinical reports, leaving many other potential uses of generative AI in cancer care unexplored. "Designing AI for patients is not the same as designing it with them," said Dr. Bradley Menz, a research fellow at Flinders University's College of Medicine and Public Health. "If these tools are going to influence cancer care, then patients, survivors and caregivers need a meaningful role in shaping how they are designed, governed and used."

The review found that trust in generative AI often depended on whether its responses were personalized, emotionally appropriate and perceived as accurate, while aspects such as willingness to use the tools and concerns about privacy were assessed only intermittently. Accountability perspectives were examined in just 3 of the 32 studies, and none assessed perspectives on safety, transparency, equity or the preservation of human autonomy.

Associate Professor Ashley Hopkins, also of Flinders University, said gaining perspectives from cancer patients could help inform the design of generative AI tools, including interface design, patient education, consent processes, workflow integration, governance and feedback mechanisms. "Future studies need to assess perspectives with greater conceptual breadth and depth," Hopkins said, noting that existing research has focused mostly on comprehension, usefulness, relevance, trust, accuracy and clarity.

The researchers said the review is intended to pave the way for more specific and detailed examination of generative AI's use in oncology.