Voices in Print: Elevating Patient Perspectives in Medical Literature

Patient perspectives can inform healthcare practices, advance provider education, and improve care quality and safety. Unfortunately, patient voices are often absent from the medical literature because of the baroque conventions of academic writing, complexities of the journal submission and review process, and expensive article processing fees.

The aim of this project is to help patients or their advocates craft compelling editorials that improve standards of care for their conditions.

Specifically, the project aims to:

1. Empower patients and advocates who have specific insights about how care for their conditions should evolve by pairing them with experienced science writers to collaboratively craft their perspectives into editorials;
2. Guide the editorials through the submission and review process and cover any related publication fees.

By providing expertise and resources to help patient advocates share their viewpoints, this project broadens conversations about approaches to treatment for certain medical conditions, promotes equity, and helps to ensure that care is shaped by the needs and experiences of those who are most affected.

Project team lead: Caitlin Rivers, PhD, MPH

Project team: Debbie Brown, PhD; Alanna Fogarty, MPH, MSc, Alyson Browett, MPH

Project supported by: Johns Hopkins Center for Innovative Medicine, Johns Hopkins Catalyst Award

Publications from this project:

• Barrow, R. It took years for my Black son to be diagnosed with cystic fibrosis. Then it happened to my family again. STAT. Published November 21, 2024. https://www.statnews.com/2024/11/21/black-cystic-fibrosis-diagnosis-newborn-screening-cftr-variant/
• In print: Eggerding, M. Online Health Communities: Bridging the Divide. Perspectives in Primary Care. Expected publication Fall 2025.
• In review: Brimhall, N. Pain, Incontinence, Palpitations: The many faces of magnesium deficiency. Family Medicine.
• In review: Hayden-Smith, R. Easing Fears, Enhancing Care: An anxiety protocol for anxious patients. The Lancet Obstetrics, Gynaecology, & Women’s Health.
• In review: Hursman, R. Beyond the Gut: Why it’s time for OB/GYNs to screen for celiac. The Lancet Obstetrics, Gynaecology, & Women’s Health.
• In review: Rogers, L. At What Cost? When baby-friendly messaging and environments cause trauma. The Lancet Obstetrics, Gynaecology, & Women’s Health.

• In review: Voltz, Whitney. My Nights Eat My Days: How my eating disorder overshadowed the autism no one saw. Annals of Internal Medicine.

   

Share Your Voice

Send a short description of your specific idea for improving care for patients with your condition.