Three years ago, 16-year-old Rianna Zhu responded to a web posting asking for youth interested in participating in a one-hour interview about their opinions on artificial intelligence (AI). Now, three years later, her opinions and those of other young people have been shared in one of the first studies that considers youth perspectives on the ethical use of AI in health care.

“Before this study I thought AI would mean a lot of robots, but AI is really a supplementary tool that can help doctors,” says Rianna. For Rianna, this study sparked her continuing involvement in research at The Hospital for Sick Children (SickKids).

“As a person from an underrepresented group, you feel like you should know things that you’re not usually expected to know in order to speak up, and that’s a barrier to entry for a lot of people,” says Rianna. “The research team created a really welcoming community where I could learn and share my opinions.”

Alongside her peers, Rianna’s feedback is helping to shape the future of AI-informed care at SickKids, providing new insights for hospital leaders and opportunities for youth to learn about the health-care system.

Building youth voices into the future of health care

Published in JAMA Network Open, a research team led by Dr. Melissa McCradden, a Bioethicist with the Bioethics Department and Associate Scientist in the Genetics & Genome Biology program, interviewed 28 participants between the ages of 10 and 17 to better understand their perspectives on AI use in medicine.The study found several themes over the course of the interviews, ranging from the risks and benefits of participating in AI-informed health research to the importance of responsible and person-centred health care, with researchers hoping to use these perspectives to support the development of future guidelines around the ethics of AI.

“Adult perceptions of AI and health data use have been well studied, but understanding the perspectives of youth in a clinical context is essential to building value-aligned policies and practices,” says McCradden. “Youth are not often considered real stakeholders in medical research, but we know that youth can and do influence health policy and research in meaningful ways, and so we’re doing that with AI now.”

In developing the focus group questions McCradden, who is the John and Melinda Thompson Director of Artificial Intelligence in Medicine for Kids (AIM), a program that seeks to support SickKids innovators in developing and integrating AI into care delivery, worked closely with Alexis Shinewald, a Child Life Specialist and co-author on the study, to help ensure the questions were accessible to a younger audience and encouraged open feedback.

“Given the lived experience of today’s youth with information technology and the patient population at SickKids, young people may be ideally positioned to inform AI integration,” says Shinewald.

“Everyone deserves to have a say”

Lukas Korkuti is a 14-year-old student and former SickKids patient who has been involved in the SickKids community his whole life, but over the last two years he has taken a particular interest in research and artificial intelligence.

“As you grow older, your opinions and values change, but just because we have different priorities doesn’t mean we shouldn’t be able to make a difference. Everyone deserves to have a say,” says Lukas.

For Lukas, potential outcomes like the use of AI in emergency rooms make this an exciting time to get involved in health care research, noting that AI may be able to help reduce wait times by connecting people to the right team faster or facilitating a diagnosis. But like many research participants, he cautions that AI’s role should be supportive and not be one making a definitive diagnosis or care plan.

“AI has to complement us and only be used as a guiding tool, never making the decision alone,” says Lukas. “In health care, a person should always be the one making the final call.”

Feedback from youth like Lukas is helping to reinforce current approaches and attitudes towards AI in health care. “A common theme we heard is that AI could be a tool to support care and system navigation,” says McCradden. “Now the next step is to identify where those tools are needed most and work closely with clinicians to make those tools equitable.”

New council will help inform the future of AI at SickKids

Engaging youth in research and the creation of future policies that touch on artificial intelligence is a mutually beneficial process, offering new insights to hospital leaders and providing opportunities for youth to learn about complex hospital systems.

McCradden and her colleagues at SickKids are working on setting up an advisory network of children and youth who are interested in contributing to the emerging research and policy around AI technologies in health care. The network is particularly encouraging participation among equity-deserving and structurally marginalized youth. Anyone who is interested in learning more about the network can reach out to McCradden’s lab at mccradden.research@sickkids.ca. nH