Introduction: ASCO is actively developing CancerLinQ (CLQ), a rapid learning system for oncology care. The purpose of this study was to explore providers' opinions and concerns related to implementation of CLQ, including ethical issues.
Methods: Twenty key informant oncologists were recruited for individual in-depth interviews through ASCO contacts, purposively selected to represent a wide variety of cancer specialties as well as different levels of familiarity with CLQ (familiar v unfamiliar). Qualitative data analysis was completed by a three-member team using an inductive narrative approach. Themes were examined by participants familiar and unfamiliar with CLQ, and quotations exemplifying each theme are provided.
Results: Participants' opinions centered on three main themes: (1) general attitudes regarding learning health care systems, (2) optimal approach to patient consent, and (3) appropriateness of data use. There was clear support for the use of big data in clinical decision making for patients and in research. Unfamiliar participants expressed concerns regarding system protections against patient identification, and both familiar and unfamiliar participants discussed the dilemma of including genetic information. Respondents were in agreement with notifying patients early; however, there was debate over whether patients should opt in or opt out. Overall, there was great concern regarding sharing data with drug companies and insurers.
Conclusion: Understanding oncologists' perspectives regarding the ethical implications of CLQ implementation is critical to its success. More research is needed on the impact of rapid learning systems on providers, patients, health systems, and the ultimate effect on cancer care.