Implementation and testing of a Web-based tool for improving communication between ovarian cancer patients and their providers through timely data collection and use

Abstract

Background Research studies show that many symptoms of ovarian cancer are not addressed adequately in the communication between patient and oncologist. To complicate matters further, this patient population has unique, complex symptom clusters which need to be managed and which themselves often complicate the communication process. The advent of secure patient portals makes possible the use of real time patient-reported outcomes (PROs) in order to improve communication between patients and their providers and enhance individual patient management by clinicians. However, there is very little current research on how real-time PROs can be used effectively to improve patient-provider communication, leading to better health care delivery and patient outcomes. Beginning in August of 2012, a total of 53 patients from the University of Minnesota Gynecological Oncology Clinic were recruited and randomized into intervention and control groups to test a new, high-fidelity prototype created by the author for patient reported questions and concerns, as part of a website designed specifically for women with ovarian cancer. Pre/post surveys were administered electronically to obtain preliminary information on acceptability and frequency of use, perceptions of usefulness for improved communication, and self-reports of perceived reduction in anxiety about communication.Results No differences between the intervention and control groups were found on any of the measures. There was a high drop-out rate and low participation in overall use of the website. Significant barriers to successful patient entry in the communication tool and use of PRO's at the clinical level were found and included low patient technology skills, memory problems, symptom burden, lack of clinician engagement with the website, and no real-time response made available from a provider. Discussion. This online communication tool was designed to facilitate communication between cancer patients and their healthcare providers; however, uptake of the tool was sub-optimal. While supportive communication tools made possible through technology can assist in meeting the communication needs of cancer patients with complex symptoms, there is much more to learn about how to effectively accomplish this. Additional research is needed on how best to meet the needs of cancer patients for information and improved communication with their oncologists, as well as longitudinal studies linking better communication to better patient outcomes.