Perceptions of patients with cancer regarding secondary data use is essential to informing the implementation of oncology learning systems, according to research published in the Journal of Clinical Oncology (published online May 24, 2017; doi:10.1200/JCO.2016.72.0284).
Advancements in health information technology have promoted the increased approval of electronic health records, which has led to the development of rapid-learning systems to leverage these data in efforts to transform cancer care. However, ethical dilemmas have arisen due to the general blending of clinical practice, quality improvement, and research. The patient perspective is a critical component to avoid harm and promote respect when implementing rapid-learning systems.
In an effort to inform the implementation of rapid-learning systems for oncology care, researchers led by Reshma Jagsi, MD, DPhil, professor and deputy chair in the department of radiation oncology, University of Michigan (Ann Arbor, MI), conducted a study to evaluate the perspectives of patients with cancer regarding potential ethical issues. Researchers surveyed 621 patients with cancer with questions pertaining to perceptions of appropriateness (scored from 1-10; very appropriate = 10) using multiple scenarios of secondary data. Responses were compared based on factors such as age, race, and education.
Researchers noted that among the total sample, 9% of patients were black, 9% were Hispanic, 38% had completed high school or less, and 59% were aged 65 or older.
Highest appropriateness was scored (8.47) for consent obtained by university researchers for data inclusion in a research study, whereas lowest appropriateness was scored (2.7) for consent not obtained by pharmaceutical companies for data inclusion in marketing products.
Majority of respondents (72%) believed that secondary use of data for research was very important, though patients with a lower education were less likely to endorse this (62% vs 78%; P < .001).
Thirty-five percent of respondents believed it was necessary to obtain consent each time research was performed. Appropriateness of using de-identified information from medical records constituted varied scores by scenario and was associated with a general distrust in the health care system.
Authors concluded that, “Perceptions of patients with cancer regarding secondary data use depend on the user and the specific use of the data, while also frequently differing by patient sociodemographic factors.” Data such as these are critical to inform ongoing efforts of implementing oncology learning systems.—Zachary Bessette
