Many people diagnosed with breast cancer rely on health information to understand their diagnosis and make decisions about their treatment. A new study from The Institute for Education Research at UHN shows that patients and caregivers often feel overwhelmed by the amount and complexity of health information and face persistent gaps in timely, inclusive, and tailored resources.
The research team interviewed 16 patients with breast cancer and caregivers to understand their experiences with accessing, evaluating, and using health information during diagnosis, treatment, and follow-up. Despite high education levels and digital literacy, many participants said they felt unprepared and overwhelmed by the volume and complexity of information presented to them. During the interviews, participants highlighted three main challenges:
● Mixed feelings about guidance from health care providers: Some participants felt reassured when clinicians cautioned against independent online research. Others, however, felt it limited their ability to actively participate in decision-making about their care.
● Information overload: Participants described difficulty navigating large amounts of information and finding resources that were timely, relevant, and appropriate for their specific stage of care.
● Need for more tailored and inclusive resources: Participants noted gaps in information, especially for male patients and people from racialized or cultural minority groups, who often could not find materials that reflected their experiences.
Participants emphasized the importance of connecting with other patients and caregivers. They also expressed strong support for a curated digital library that would bring trustworthy information together in one easy-to-access place.
These findings highlight opportunities for health care systems to strengthen information and resources available to support informed decision-making, promote patient participation, and create more equitable cancer care. Future research should explore the needs of patients who face additional barriers to accessing health information, including those with lower health literacy or limited support networks.
Mohamed Ugas, first author of the study, is a research analyst at the Princess Margaret Cancer Health Literacy Research Centre.
Dr. Janet Papadakos, senior author of the study, is a Scientist at The Institute for Education Research at UHN and the Co-Director of the Princess Margaret Cancer Health Literacy Research Centre. At the University of Toronto, Dr. Papadakos is an Assistant Professor at the Institute of Health Policy, Management, and Evaluation.
This work was supported by The Princess Margaret Cancer Foundation, with operational support provided by UHN Foundation.
Ugas M, Giannopoulos E, Tan J, Cil TD, Croke J, Forbes R, Giuliani ME, Koch A, Papadakos T, Quartey NK, Snow M, Westergard S, Papadakos J. Exploring the information needs of breast cancer patients and families in a large, urban, academic hospital: perceived barriers and facilitators to finding relevant and credible information. Support Care Cancer. 2026 Jan 23. doi: 10.1007/s00520-026-10344-3.