Tell Us ^™: A web-based tool for improving communication among patients, families, and providers in hospice and palliative care through systematic data specification, collection, and use

Context: Routine electronic patient-reported outcome collection in patients with advanced disease could improve communication among patients, caregivers, and providers, the timeliness of identifying problems, and effectiveness of follow-up. Objectives: To develop a Web-based tool to collect symptoms and needed data and provide feedback to hospice and palliative care patients, caregivers, and providers. Methods: We developed Tell Us ^™ based on an existing pure Web technology platform, the Medical Decision Logic, Inc., Health Science Process Framework. The software development process included eliciting information on systems and needs, mapping care processes with three diverse hospices, and soliciting ideas for the software from clinicians and researchers. We developed a prototype software product, incorporated the hospices' processes, assessment questions, and educational materials, and refined the product with feedback from other hospice and palliative care professionals. Results: Tell Us™ includes modules for authoring and deploying clinical queries and completion schedules, for enrolling clinical sites and patients for patients and/or families to complete assigned assessments on a scheduled basis, and for providers to view patient-reported data. Tell Us™ provides customizable automated provider e-mail alerts based on patient responses (such as uncontrolled symptoms or need for medication refills) and provides educational materials targeted to patient needs. Conclusion: This Web-based toolset may be useful for improving communication among hospice and palliative care patients, caregivers, and providers, and proactive patient management. Future research will involve integrating the software into care and evaluating its feasibility and use for data collection, patient education, and improving outcomes.