PatientLead Navigator
References and Further Reading
The sources below support the program’s discussion of medical documentation, diagnostic interpretation, uncertainty, and care navigation in rare and episodic conditions. They are provided as conceptual anchors rather than as evidence for any single sentence.
Use
These references support system understanding and communication clarity. They are not clinical guidance or management recommendations.
Section
Medical Records and Clinical Decision Making
Graber ML, Franklin N, Gordon R. Diagnostic error in internal medicine. Archives of Internal Medicine. 2005.
Examines how prior documentation, framing, and diagnostic momentum influence subsequent clinical reasoning.
El-Kareh R, Hasan O, Schiff GD. Use of health information technology to reduce diagnostic errors. BMJ Quality & Safety. 2013.
Explores how electronic records shape interpretation, continuity, and persistence of clinical judgments.
Tversky A, Kahneman D. Judgment under uncertainty. Heuristics and biases. Science. 1974.
Foundational work on anchoring and framing effects that underlie interpretation of prior information.
Section
Documentation Practices and Information Loss
Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Annals of Internal Medicine. 2012.
Primary evidence on giving patients access to visit notes and what it changes for understanding, trust, and follow-through.
Eze-Nliam CM, Cain K, Bond K, et al. Discrepancies between the medical record and the reports of patients with acute coronary syndrome. Journal of General Internal Medicine. 2012.
Shows measurable gaps between what patients report and what ends up in the chart, with downstream implications for care.
Sinsky C, et al. Allocation of physician time in ambulatory practice. Annals of Internal Medicine. 2016.
Provides context for documentation constraints and summarization practices driven by time pressure.
Section
Diagnostic Anchoring and Interpretation Persistence
Croskerry P. The importance of cognitive errors in diagnosis. Academic Medicine. 2003.
Details how early interpretations persist and shape later decision making.
Ly DP, Shekelle PG, Song Z. Evidence for anchoring bias during physician decision-making. JAMA Internal Medicine. 2023.
Large-scale evidence consistent with anchoring effects influencing testing and delayed workup when early framing is salient.
Section
Rare and Episodic Condition Care
National Academies of Sciences, Engineering, and Medicine. Rare Diseases and Orphan Products. 2010.
Authoritative overview of fragmentation, uncertainty, and system strain in rare disease care.
EURORDIS. The Voice of Rare Disease Patients.
Large scale patient survey documenting diagnostic delay, fragmented care, and navigation burden.
National Organization for Rare Disorders (NORD). The Diagnostic Odyssey.
U.S. based data on cumulative healthcare engagement and systemic gaps in rare disease management.
Section
Emergency Care, Risk, and Protocol Driven Decision Making
Powers WJ, et al. Guidelines for the early management of acute ischemic stroke. Stroke. American Heart Association.
Illustrates risk exclusion priorities and protocol driven interpretation in emergency settings.
Newman Toker DE, et al. Missed diagnosis of stroke in the emergency department. Diagnosis. 2014.
Examines how risk management frameworks shape emergency diagnostic behavior.
How these references are used
How These References Are Used
These sources support the program’s discussion of:
- How records shape interpretation and credibility
- Why documentation compresses lived experience
- How diagnostic interpretations persist across encounters
- Why uncertainty is amplified in rare and episodic conditions
- How system structure influences care consistency
They are not intended to serve as clinical guidance or management recommendations.