Accessible Science, Empowered Patients: A Project to Expand Patient Inclusivity in Medical Publishing
Caitlin Rivers PhD, Alyson Browett MPH
Center for Health Security
The phrase “patient-centered care” is used in healthcare settings to underscore the importance of listening to the patient and centering their needs. However, in the status quo, it stands almost paradoxically to the other oft-used phrase “evidence-based care,” as patient and caregiver’s voices are frequently absent from the scientific literature. There are many barriers to having patient and caregiver voices represented in scientific journals — baroque academic writing conventions, complexities of the journal submission process, and expensive article processing fees are but some of the few.
The project team aims to reconcile this paradox by pairing patient advocates and a science writer to produce a collaborative editorial that accurately conveys patient perspectives while conforming to the norms of academic writing and the standards of the selected journal. By giving patient advocates the resources to amplify their voices, this team hopes to promote equity in the practice of medicine, broaden the conversations surrounding standards of care, and ensure that future care is shaped by those who are most affected.