Electronic Surveillance of Testicular Cancer: Understanding Patient Perspectives on Access to Electronic Medical Records

摘要

Abstract This study explores the basis for providing effective access to electronic medical record data as a reference source for patients with early-stage testicular cancer undergoing surveillance follow-up programs. Purpose: To understand patient perceptions and attitudes regarding online access to testicular cancer surveillance test results, and to identify factors that may be important in maximizing referencing of electronic medical records (EMRs) by patients for these results. Methods: In this qualitative study, seven focus groups were conducted with a total of 22 patients undergoing surveillance for testicular cancer. Transcript data were analyzed iteratively using combined manual and computerized coding by two independent coders to generate a theoretic framework grounded in the data. Results: Practicality, meaning of information, patient-physician relationship, risk of recurrence, and role of technology were identified as interrelated factors that frame how patients regard potential surveillance technology. The influence of each factor hinged on its relationship with reassurance—the central predominant factor. Additionally, time since start of surveillance seemed to affect the relative importance of all other factors. Conclusion: Prevailing models of technology acceptance understate the complexity of the situation of the patient user and the implications of online access to health information. Surveillance for testicular cancer seems to be a suitable context for patient access to EMR information if patient perspectives are to be understood and considered. Reassurance is the overriding element influencing attitudes.