Outcomes in breast cancer from the patient perspective: Development of an innovative, user-centered platform for collection and reporting of patient-reported data.

Abstract

188 Background: Transition towards a patient-centered healthcare model has been recognized as an important step towards improving the quality and coordination of breast cancer care. Although evidence suggests that patient self-reporting of quality of life improves clinical care, there are significant barriers to successful collection and use of patient-reported data (PRD) including a lack of a technology designed to fully engage patients and providers, limited electronic health record (EHR) integration, and suboptimal clinical implementation strategies. To address this, our team developed imPROVE, an innovative and customizable patient-reported data (PRD) collection platform consisting of a patient web-application and a clinician portal. Methods: This study was performed as a quality improvement initiative at Dana-Farber Cancer Institute (DFCI) and Brigham and Women’s Hospital (BWH). Multiple perspectives were sought from key stakeholders to ensure that the content and design of the platform target the needs of the end-users and garners the latest in technological advances. Development and testing were performed using best practices in user-centered design and agile development, and iterative programming sprints followed by stakeholder feedback and testing. Content was evaluated using probing questions about relevance, comprehensiveness, and clarity. Design was assessed through feedback about the look and feel of the platform and its usability. Results: A multidisciplinary team of 28 stakeholders in the field of breast cancer care, patient-reported outcomes research and value-based healthcare was assembled. Recurring group meetings (n = 8), individual patient interviews (n = 23), and two focus groups with the DF/HCC Breast Cancer Advocacy Group, were conducted. The resultant application is a hybrid mHealth application that is supported by iOS and Android and is comprised of five screens (myCare, myStory, myResources, myCommunity, myNotes). Patients are provided written and graphical displays of their PRD as well as tailored resources that are customized depending on their type and stage of treatment. The clinician portal is comprised of an overview table listing all patients enrolled for each individual clinician, as well as individual patient profiles demonstrating demographic, clinical, and outcomes data. Conclusions: imPROVE has the potential to create a paradigm shift in the delivery of care for breast cancer patients. Next steps will include implementation of imPROVE within the breast oncology and plastic surgery services at DFCI and BWH.