Table of Contents

• Purpose & Scope of This Guide
• When to Write A Self-Report
• Uses

Introduction

“… it is a safe rule to have no teaching without a patient for a text, and the best teaching is that taught by the patient himself.”

—Sir William Osler, a founding professor of Johns Hopkins Hospital (1889) and widely considered a forefather of modern medical education

A case report is a write-up of a single case (e.g. medical, psychological), typically with novel or otherwise interesting features¹. Because they lack randomization and other experimental controls, they belong toward the bottom of the hierarchy of evidence. However, by describing the course of the case, i.e. background, clinical findings, interventions, and outcomes, professionals in many fields have been able to raise the alarm about emergent conditions, suggest modifications to diagnostic criteria, and advocate for the well-being of the laypeople in their care. Therefore, while limited, case reports are a valuable descriptive design.

When writing up a case report in any discipline, the CARE (”CAse REport”) Guidelines² and elaboration document³ are an excellent resource. However, they do not explicitly address autobiographical case reports — that is, case reports in which a writer details their own experience and findings. Such works are increasingly represented in published literature⁴, and have many potential uses outside of peer-reviewed journals.

The aim of this crowd-sourced guide is to explore the application of this approach, and to support professionals and laypeople in describing their own symptoms, diagnostic processes, interventions attempted, and outcomes.

Purpose & Scope of This Guide

The purpose of this guide is to encourage writing about conditions and populations that otherwise may not otherwise receive clinical and academic attention. Patients/clients may be motivated to write about their own condition when professionals misunderstand their condition, treatments are ineffective, or they otherwise feel disempowered.

This guide is not intended to be an introduction to academic writing or the CARE Guidelines. The resulting case report is not necessarily suitable for publication, and thus the focus of this guide is on clearly communicating one’s case, rather than adhering to publication standards.

When to Write A Self-Report

Existing guidelines offer possible reasons a case might qualify for a write-up¹. These can be adapted for autobiographical work if you, the author:

• … are part of a population that is poorly represented in the literature (e.g. age group, gender). Autobiographical works can deepen scientific understanding of human variation through the principle of “nothing about us without us⁵.”
• … have anatomical features or other findings that are atypical.
• … have a novel or rare condition that is poorly represented in the literature.
• … have an unusual combination of conditions that complicates diagnosis and treatment. In addition to contributing to scientific understanding, conducting a literature review for and writing up a case may reveal new information or connections that help clarify complexity.
• … have experienced unusual symptoms not typically associated with any conditions, or those with which you are diagnosed.
• … have undergone treatment(s) with unexpected outcomes, especially adverse.
• … can present findings that suggest a new or unexpected course of a condition, such as unusual pathogenesis, effects of treatment, or outcome.
• … wish to propose a unique but effective theory or therapeutic approach that warrants further study.
• … have experienced significant personal impact and wish to illustrate your experiences to promote medical education.
• … wish to engage in self-exploratory work (which does not necessarily adhere to rigorous academic publishing standards) to increase your self-knowledge and understanding of your condition(s). Engaging in such a project may have psychotherapeutic value, improve communication skills, and empower you to self-advocate.

While it is not necessary to hold a degree or professional license to write autobiographical case reports, it is strongly recommended that you only continue once familiar with the following:

• Compiling a case report requires organization of literature, data, and findings. Ensure that your working files and information are organized, centralized, and backed up in case of data loss.
• Your writing should be clear and well-organized. If at all possible, have your case report proofread and edited before sharing.
  • Most case reports are written in APA format.
• The case reporting process involves a literature review, or in lay terms, using an academic search engine like Google Scholar to find useful information and to make sure you aren’t reinventing the wheel. If you find highly relevant works, they can lead you to even more; check their works cited and citing, or use a citation-mapping app.
• Because concepts like hypotheses, evidence, and experiments come up in case reports, it is important to avoid common mistakes via the scientific method⁶.
• Before writing within a particular field, it is important to familiarize yourself with the theories, vocabulary, and guidelines of evidence-based practice of that field.

Uses

After writing an autobiographical case report on a rare condition: “Aw man, this published case report involving my condition is way better than mine.”

A researcher seeing two case reports on a rare condition, one published and one not: “Great Scott! Two case reports!”

—paraphrase of the Two Cakes Rule

Well-written autobiographical case reports have unique potential uses:

• When meeting with a new medical provider or other professional, a write-up can provide a clear introduction to one’s case. It is also useful for future reference if the case changes significantly.
• Those facing similar challenges may feel empowered and less isolated after reading the first-hand accounts of others with their condition(s).
• When researching a novel or rare condition, case reports can provide useful details that may otherwise not exist in the literature. In this function, they advocate for and raise awareness of their subjects.
• Such reports can highlight gaps or deficiencies in existing healthcare systems or treatments, potentially inspiring further research or policy changes to address these issues.

1. Alsaywid, B. S., & Abdulhaq, N. M. (2019). Guideline on writing a case report. Urology Annals, 11(2), 126–131. https://doi.org/10.4103/UA.UA_177_18 ↩ ↩²

2. Gagnier, J. J., Kienle, G., Altman, D. G., Moher, D., Sox, H., & Riley, D. (2013). The CARE guidelines: Consensus-based clinical case reporting guideline development. Global Advances in Health & Medicine, 2(5), 38-43. https://doi.org/10.7453/gahmj.2013.008 https://www.care-statement.org/ ↩

3. Riley, D. S., Barber, M. S., Kienle, G. S., Aronson, J. K., von Schoen-Angerer, T., Tugwell, P., … & Gagnier, J. J. (2017). CARE guidelines for case reports: explanation and elaboration document. Journal of Clinical Epidemiology, 89, 218-235. https://doi.org/10.1016/j.jclinepi.2017.04.026 ↩

4. See Example Case Reports. ↩

5. Iezzoni, L. I., & Long-Bellil, L. M. (2012). Training physicians about caring for persons with disabilities: “Nothing about us without us!” Disability and Health Journal, 5(3), 136-139. https://doi.org/10.1016/j.dhjo.2012.03.003 ↩

6. Harris, W. (2021, August 19). How the scientific method works. HowStuffWorks. https://science.howstuffworks.com/innovation/scientific-experiments/scientific-method9.htm ↩