Accuracy of Patient Self-Reported Disease Characteristics Compared to Medical Record Data Presents Important Discrepancies
Outcomes4Me Inc., a developer of a leading free mobile app and platform to navigate cancer treatment and care, announced, at the San Antonio Breast Cancer Symposium, findings from a study done in collaboration with the Mass General Cancer Center, Boston. The pilot study analyzed the concordance of patient reported disease characteristics compared to electronic medical record (EMR) data. Outcomes4Me found that the data clearly points to the need for patients to have a better understanding of their breast cancer diagnosis. Patients’ understanding of their breast cancer diagnosis is important in order to improve treatment adherence, shared decision-making, and clinical trial matching. The study shows important discrepancies between EMR and patient self-reported information, shining a light on the need for better patient education and medical records access.
The study, which collected data via a survey and an in-app questionnaire between June 2020 to December 2020, found that 97 percent of the study cohort reported that they “somewhat” or “strongly” understood their cancer diagnosis. Yet, 24 percent of patients answered “I don’t know” or “I’m not sure” to fundamental questions about their disease characteristics including hormone receptor (HR) status, and/or HER2 status.
“There is no doubt that the inaccuracies found in self-reporting suggest a need for improved patient education regarding key cancer characteristics and a need for caution when relying on self-reported characteristics for clinical trials matching and targeted patient education,” said Maya R. Said, Sc. D., founder and CEO of Outcomes4Me. “These findings underscore a problem that all stakeholders here at the SABCS – practicing providers and researchers – involved in breast cancer need to have top of mind. The burden of improving patients’ understanding of breast cancer should not be on the patient alone.”
The study also found that HR and HER2 status had limited concordance with the EMR, in contrast to a high degree of accuracy in self-reported metastatic status. Receptor status is critically important to understanding breast cancer and what treatment options are available, including clinical trials. Yet, only 55 to 61 percent of patients accurately self-reported their HR and/or HER2 status. In particular, HER2 status was only reported accurately among 64 to 70 percent of the cohort, compared to 79 to 89 percent of patients accurately reporting their metastatic status.
“Patient education is critical to shared decision making,” said Steven Isakoff, MD, PhD, Breast Oncologist at Mass General Cancer Center and lead author on the study. “Patients need to have a better understanding of their breast cancer diagnosis in order to have more informed decision-making conversations. Without accurately knowing critical disease characteristics, our patients are not in the best position to make informed decisions with their oncologist.”
These results further highlight the need for digital platforms to integrate self-reported characteristics with EMR access to help provide accurate patient information to address these critical needs. The Outcomes4Me platform was developed to enable this integration with a goal to impact patient empowerment and care. The Outcomes4Me app is available free to users on both the App Store and Google Play.