Patient Voices Must Play a Greater Role in Shaping Generative AI for Cancer Care

Flinders University researchers were part of an international team that examined how people affected by cancer view the growing use of generative artificial intelligence (AI) in cancer care. Their scoping review identified 2,441 records but found only 32 studies that explored the perspectives of cancer patients, survivors and carers on the use of generative AI in their care.

Overall, people affected by cancer generally viewed generative AI favourably when it made health information easier to access, understand and read. However, most studies focused on using AI to provide cancer information or simplify clinical reports, leaving many other potential applications of the technology in cancer care largely unexplored.

“Designing AI for patients is not the same as designing it with them,” says Dr Bradley Menz, a Research Fellow in the College of Medicine and Public Health at Flinders University. “If these tools are going to influence cancer care, then patients, survivors and carers need a meaningful role in shaping how they are designed, governed and used.”

The review found that several important aspects of engagement with generative AI had received only limited attention. These included patients’ willingness to use AI, their familiarity with the technology, whether AI-generated responses aligned with their expectations, and concerns about privacy. Trust also appeared to depend on whether AI responses were perceived as accurate, personalised and emotionally appropriate.

Significant gaps emerged in the issues researchers had explored with people affected by cancer. Among the 32 studies included in the review, only three examined perspectives on accountability, while none assessed views relating to safety, transparency, equity or the preservation of human autonomy. The findings suggest that research has yet to fully address some of the broader ethical and practical questions surrounding AI in oncology.

“Gaining perspectives from cancer patients might help inform the design and implementation of generative AI that best serves oncology patients, including improved interface design, patient education, consent processes, workflow integration, governance, monitoring and feedback mechanisms,” says Associate Professor Ashley Hopkins from the College of Medicine and Public Health at Flinders University.

The researchers say future studies should examine patient perspectives with greater breadth and depth. Existing research has concentrated primarily on comprehension, usefulness, relevance, trust, accuracy and clarity, while giving considerably less attention to how patients view the wider implications of introducing generative AI into cancer care.

The team hopes the review will encourage more detailed research into the use of generative AI in oncology, particularly research that actively involves people affected by cancer. Understanding their perspectives could help determine how AI influences uptake, engagement and effectiveness, while identifying concerns about its broader impacts and ensuring future technologies better reflect the needs and expectations of the people they are intended to serve.

More information: Bradley Menz et al, Perspectives of people affected by cancer toward generative AI in oncology: A scoping review of applications, evidence gaps, and future priorities, European Journal of Cancer. DOI: 10.1016/j.ejca.2026.116990

Journal information: European Journal of Cancer Provided by Flinders University

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