For more than 20 years, Lixin Song, PhD, RN, FAAN, vice dean for research and scholarship and professor of nursing at The University of Texas at San Antonio (UT San Antonio) School of Nursing, has studied how cancer patients and their families navigate the challenging experience of making decisions about treatment while facing uncertainty, fear and a flood of medical information.
A multi-site clinical trial led by Song and funded through the Department of Defense Congressionally Directed Medical Research Program through an Implementation Science Award of $2.8 million aims to help prostate cancer patients and their families make better-informed decisions earlier in the care process. The four-year project will evaluate an innovative mobile health intervention designed to improve communication between patients and providers while guiding patients through key stages of their cancer journey.
The study centers on the Support, Communication and Information Program for Prostate Cancer–Interactive (SCIPI), which uses artificial intelligence and machine-learning supported tools to help patients and their families find scientifically accurate, evidence-based information, organize questions and prepare for conversations with their physicians.
“This program is about helping patients and families seek credible information, process it and retain it so that when they meet with their doctors they feel prepared and confident in discussing the options and satisfied with the decisions they are making,” Song said.
The research will test whether the SCIPI platform improves communication with clinicians, increases patient satisfaction with treatment decisions and enhances quality of life for patients.
The project also represents a significant step in evaluating how digital health technologies can be integrated into clinical care. If successful, the program could serve as a scalable model for supporting cancer patients in a variety of healthcare settings, including academic medical centers, community hospitals and military health systems.
Addressing a silent struggle
Prostate cancer presents a unique set of challenges that can be difficult for patients to discuss openly.
“It’s a very private condition,” Song said. “Many men may be suffering in silence because of issues like sexual dysfunction or loss of control of bodily functions. These are very intimate topics, and people often don’t talk about them.”
Those challenges can affect quality of life even after treatment ends, making communication and support especially important.
Earlier research by Song’s team, funded by the National Cancer Institute and the National Institute of Nursing Research, developed and tested pilot programs designed to support prostate cancer survivors as they transitioned from treatment back to daily life.
Participants valued the programs, but their feedback revealed an important insight.
“People told us the program was helpful, but it came too late. They said it would have been more beneficial during the treatment decision-making process right after diagnosis,” Song said.
That realization prompted the research team to rethink when support should be offered.
Helping patients earlier in the cancer journey
Cancer diagnoses often bring a wave of medical information that can overwhelm patients and their families. In the early days after diagnosis, patients must weigh multiple treatment options that each have potential side effects and implications for long-term quality of life.
“At that moment, people are hearing a lot of information and experiencing a lot of emotions. It can be difficult to absorb everything or even know what questions to ask,” Song said.
Over time, some patients may experience regret when they look back months or years later and wish they had chosen a different treatment option.
The SCIPI program aims to reduce that risk by helping patients access reliable information and prepare for clinical consultations earlier in the process.
The web-based platform organizes information into sections that guide patients through the stages of their cancer journey, offering guideline-based medical evidence and educational resources in multiple formats, including written content, videos and audio explanations to accommodate different learning styles.
The system also includes a secure chatbot powered by artificial intelligence and natural language processing. Unlike open internet search tools, the chatbot operates within a closed system that draws only from vetted scientific sources such as government and research-based health information.
“There is so much information online, and not all of it is credible,” Song said. “We wanted to make sure the information people receive is accurate and evidence based.”
The program is designed not only to help patients but also to streamline communication with physicians and care teams.
“There’s been an information explosion for clinicians, too,” Song said. “If this program can help patients come prepared and informed, it can improve the quality of those patient-provider interactions while decreasing the burden for providers to repeat the same information to different people.”
Researchers also hope the platform will make it easier for patients with limited health literacy or less experience navigating digital health information to access reliable guidance during the stressful period immediately following diagnosis.
A national collaboration
The new pilot proof-of-concept study will engage patients, families and providers to determine how best to integrate SCIPI into electronic medical records so it can reach more people, while also evaluating how well the program improves communication, decision-making satisfaction and quality of life for patients.
The project is being conducted across four cancer centers nationwide to ensure broad applicability of the results. The leading site is the Mays Cancer Center at UT Health San Antonio and other participating sites include UNC Lineberger Comprehensive Cancer Center, the Moores Cancer Center at UC San Diego and the University of Kansas Cancer Center.
The project began in September, and the research team will begin recruiting participants in phases starting this spring. If the study demonstrates feasibility and early effectiveness, the results could pave the way for a larger national trial and eventual adoption of the platform across health systems.
“Nursing research is about solving real problems in the real world,” Song said.
Ultimately, Song hopes the technology will help patients feel more informed and confident during one of the most difficult times of their lives.
“When people understand their options and feel their voices matter, they are more likely to feel at peace with the decisions they make,” she said.