Recent reports from the Institute of Medicine and National Cancer Policy Board have highlighted problems in the quality of care in the United States in general and for cancer care in particular. Innovations in information technology and electronic medical records may help improve the quality of care. The National Cancer Institute has called for multidisciplinary studies to improve our understanding of the role of technology and the Internet in delivering novel health-related interventions (PA-06-224). Through a previous grant, we organized a multidisciplinary network of experts to design a prototype website to (1) collect PRO data from cancer patients, (2) link the PRO data with the electronic medical record, and (3) facilitate use of PRO data in managing individual patients. The final deliverable for the initial grant was a prototype website ready for testing, and we are now ready to conduct the initial pilot-test. The overall goal of this project is to pilot-test the prototype website to assess its use, usefulness, and acceptability to clinicians and patients. We have assembled a multidisciplinary team to conduct this research. The study investigators include experts in cancer outcomes and effectiveness research and clinical oncology. A multidisciplinary Scientific Advisory Board drawn from the experts from the original grant will provide their perspectives in cancer outcomes and effectiveness research, clinical oncology, information technology, electronic medical records, behavioral science, decision science, and clinical trials. This pilot-test will take place at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins and will be conducted in two phases. In both phases, we will enroll breast and prostate cancer patients currently undergoing treatment. The clinicians managing these patients will also be study subjects and provide their feedback on the website's feasibility and value. Medical oncologists will participate in Phases 1 and 2, and radiation oncologists will participate in Phase 2 only to provide a new perspective. Phase 1 is a 5-month, single-arm initial pilot-test in approximately 50 patients. In Phase 1, there will be close monitoring of how patients and clinicians use the website in clinical practice and whether they find the website useful and acceptable. Based on the Phase 1 results, the web system will be modified as needed to improve its use, usefulness, and acceptability. In Phase 2, we will conduct an 8-month single-arm follow-up pilot test in 200 patients to observe how the revised web system operates under """"""""real-world"""""""" conditions, with infrequent and random data collection. After Phase 2, we will further refine the web system and apply for additional funding to conduct a multi-center randomized controlled trial to evaluate the website's impact on patient care and outcomes. Public Health Relevance: This study is designed to pilot test a website that will collect information from cancer patients regarding their functioning and well-being and link that data with the electronic medical record for use in clinical encounters. If the website can demonstrate its feasibility and value in this study, future studies will evaluate its impact on patient care and outcomes. In the long run, this website is expected to improve the quality of cancer care.
This study is designed to pilot test a website that will collect information from cancer patients regarding their functioning and well-being and link that data with the electronic medical record for use in clinical encounters. If the website can demonstrate its feasibility and value in this study, future studies will evaluate its impact on patient care and outcomes. In the long run, this website is expected to improve the quality of cancer care.
