Patient Roadmaps for Chronic Illness: Introducing a New Approach for Fostering Patient-Centered Care

Abstract

Background. Too frequently, patients with chronic illnesses are surprised by disease-related changes and are unprepared to make decisions based on their values. Many patients are not activated and do not see a role for themselves in decision making, which is a key barrier to shared decision making and patient-centered care. Patient decision aids can educate and activate patients at the time of key decisions, and yet, for patients diagnosed with chronic illness, it would be advantageous to activate patients in advance of critical decisions. In this article, we describe and formalize the concept of the Patient Roadmap, a novel approach for promoting patient-centered care that aims to activate patients earlier in the care trajectory and provide them with anticipatory guidance. Methods. We first identify the gap that the Patient Roadmap fills, and describe theory underlying its approach. Then we describe what information a Patient Roadmap might include. Examples are provided, as well as a review comparing the Patient Roadmap concept to existing tools that aim to promote patient-centered care (e.g., patient decision aids). Results and Conclusions. New approaches for promoting patient-centered care are needed. This article provides an introduction and overview of the Patient Roadmap concept for promoting patient-centered care in the context of chronic illness. Highlights Too frequently, patients with chronic illnesses are surprised by disease-related changes and are unprepared to make decisions based on their values. In this article, we formalize the concept of a Patient Roadmap tool to provide anticipatory guidance and promote patient-centered care for patients with chronic illnesses. The Patient Roadmap aims to activate patients early in the care trajectory to prepare them to take part in future decisions. The Patient Roadmap provides a unique opportunity to introduce patients to likely future decisions, as well as the idea that those decisions may depend on their unique values and preferences.