Building platforms for collaborative care and clinical research in testicular cancer (TC): New approaches for care delivery for a model neoplasm.

Abstract

308 Background: TC is a “model of a curable neoplasm.” In expert centers, more than 95% of patients are cured and enjoy long, high quality survivorship. Unfortunately, emerging data demonstrate variations in quality outcomes seen in high volume centers. Result are not fully replicated in U.S. community settings, low resources countries or in settings of uneven access. We hypothesize that real time, electronic information exchange in TC can influence favorably clinical decision making, patient-centered outcomes, value and quality of survivorship across business and geographic boundaries. Further, we speculate that aggregated, de-identified clinical/ biological information will serve as a template for a rapid learning system to refine clinical management and advance biological understanding. Methods: Our primary objectives were to (1) Build organizational/administrative capacity. (2) Engage patients/local providers. (3) Develop the information infrastructure to accomplish real time exchange of live patient-permitted clinical data (patient reported inputs, laboratory, imaging) and timely transmission of clinical decision support and ongoing oversight of care delivery in the community. (4) Establish a proof-of-principle demonstration in a community-based, electronically organized care delivery system. Results: Organizational: TC Commons, a nonprofit organization, was founded to house this effort. Leading academic institutions form the knowledge base, initial data sharing network and administrative structure for this electronic cooperative group. Early implementation has utilized cloud-based resources and telepresence. Community Engagement: We are utilizing organized social media efforts and partnering with patient advocacy groups. IT Infrastructure: We are creating public/private collaboratives to house the electronic capacity with appropriate privacy concerns. Proof of Principle: We are selecting community partner organizations and planning grant submissions. Conclusions: Expert platforms to enhance care delivery, patient value and experience, and clinical research can be built using a “bootstapping,” cost-sensitive approach.