Why AI Cancer Care Tools Must Be Developed With Patients and Advocates

According to a survey of oncology patients published in JMIR Cancer, more than 80% of patients believe AI in cancer care will improve outcomes over the next five years.

But while AI provides instant information, it’s not without risks or concerns. For example, information could be outdated or inaccurate, and a patient’s privacy could be at risk if they share their private health information.

Patients are already using AI, says Meghan Gutierrez, CEO of Lymphoma Research Foundation, a non-profit organization that provides information, expert-led education, and community support to people affected by lymphoma, a type of blood cancer. But she’s concerned about the way patients are using it. She recently spoke with a lymphoma patient who saw PET scan results and was worried that his cancer had returned.

Before speaking with his oncologist, the patient uploaded the results into an AI tool to better understand them, and began considering possible treatments and what it might mean for his prognosis.

But Gutierrez was troubled: “The patient, in this moment of anxiety, when we so often see people reach out and try to find information in any way that they’re able, hadn’t yet spoken to his healthcare team and was already making extrapolations about his prognosis based on the AI response. Some of the information it provided reflected treatment guidance from nearly a decade ago.”

That’s why she encourages patients, caregivers, and providers to work together collaboratively, including using AI as an educational tool that doesn’t replace, but instead complements human cancer care.

AI tools need to be trustworthy and accurate — and shaped by and with the people who will rely on them most.

“Patients with cancer and their caregivers want something to trust,” said Anand Reddi, global head of digital health for BeOne Medicines, a leading global oncology company. “As AI becomes a go-to source for answers, we must ensure it delivers information that is current, credible, and aligned with the latest data regarding treatment options.”

Recognizing this shift, BeOne is teaming up with the cancer community to help shape AI tools that better support patients, caregivers, and providers. The company recently convened a first-of-its-kind Patient Advocacy AI Innovation Lab, bringing members of the blood cancer community together to discuss patient and caregiver needs, how to harness the technology, and guide patients in using AI tools effectively.

“AI is central to BeOne’s purpose of developing and delivering innovative oncology medicines to patients faster,” said Jen Branstetter, executive director of North America corporate affairs for BeOne. “But when it comes to the patient journey, AI needs to be shaped in partnership with patients and advocacy leaders. We want this to be an ongoing dialogue about how we co-create even better AI tools to ensure they reflect real-world needs of patients living with blood cancer.”

Branstetter says partnering with patient advocacy organizations, like Lymphoma Research Foundation, is essential, calling these types of organizations the “trusted translators” of treatment information, health data, and diagnosis.

The goal of the Lab was to listen to all stakeholders involved to understand patients’ cancer journeys and improve education and access.

“Information sharing is so critical for our blood cancer community, because we are speaking about people’s lives and their ability to access the most efficacious, innovative treatments possible for their disease,” Gutierrez said. “We need to shape our understanding and AI tools together to promote trust, responsible use, and ensure our approach keeps pace with how quickly the technology is evolving.”

BeOne, a leader in blood cancer care, is leveraging these insights to develop new digital tools to help patients — including those living with chronic lymphocytic leukemia (CLL) — navigate their cancer care with greater confidence. The company is focused on ensuring these tools reach patients and providers in ways that meaningfully support shared-decision making, with accuracy and transparency at the forefront.

BeOne Medicines is building the world’s leading oncology company — driven by scientific excellence and exceptional speed — to reach more patients than ever before. Together, we’re how the world stops cancer. To learn more, visit www.beonemedicines.com