Patient Roadmaps for Chronic Illness

What are Patient Roadmaps?

Patient Roadmaps for chronic illness are a novel approach to patient support and education that provide anticipatory guidance, helping patients and caregivers understand what to expect throughout the course of a long-term condition and how to navigate care over time.

Too often, patients with chronic illnesses are surprised by disease-related changes and are unprepared to participate in medical decisions. Many do not see a role for themselves in decision making, which is a key barrier to patient-centered care.

Traditional patient education tends to focus on defining disease terms and treatments. That is helpful, but it does not give patients the longer-term perspective they often want. Patient decision aids, meanwhile, help patients make a single discrete decision, when patients with chronic illness could benefit from support and activation well in advance of any one decision.

What have we accomplished so far?

My team and I described and formalized the concept of the Patient Roadmap: a new framework for promoting patient-centered care that aims to activate patients earlier in their care and give them guidance about what lies ahead.

Patient Roadmaps are designed to:

  • Help patients understand their diagnosis and treatment journey

  • Improve communication between patients and healthcare providers

  • Support informed, shared decision making

  • Reduce uncertainty by informing expectations for what comes next

  • Encourage proactive disease management and better health outcomes

What’s next?

Two Patient Roadmap tools are currently in development and testing:

  • The Dementia Roadmap, funded by the Anschutz Foundation

  • The Coronary Artery Disease Roadmap, supported in part by VA Clinical Innovations funding

Both have shown promise in pilot testing. The Dementia Roadmap is proving very popular, with more than 1,400 copies distributed to organizations across Colorado.

Further Reading

Publications

Scherer LD, Matlock DD, Allen LA, Knoepke CE, McIlvennan CK, Fitzgerald MD, Kini V, Tate CE, Lin G, Lum HD. (2021). Patient roadmaps for chronic illness: introducing a new approach for fostering patient-centered care. Medical Decision Making: Policy and Practice, 6(1).

Scherer LD, Li G, Kini V. (2024). Impact of a patient-centered tool to reduce misconceptions about coronary artery disease and its treatment: the CAD Roadmap. Patient Education and Counseling: Innovation.