Understanding the language of illness


Patients with extended illness or chronic conditions often acquire a communicative competence with far more complex medical terminology than their doctors realize.

This is important, given that patients are too often seen as passive recipients of medical information, or worse, incapable of understanding their own health data. Recent studies show that one of the most effective prescriptions for increasing health outcomes and reducing medical malpractice rates is improving how doctors communicate with their patients.

Aligning their language towards patients carries the potential impact of improving patients’ outcomes. For physicians, the impact could be reducing malpractice rates and delivering better care.

Understanding patients is especially crucial because of federal passage last month of the 21st Century Cures Act. The Act promotes incorporating the patient perspective in a more intentional and systematic way throughout the drug and device development process. As former FDA Commissioner Robert Califf wrote, “This new law rightly recognizes that patients should play an essential role in the development of drugs and devices to diagnose and treat their disease, since patients are in a unique position to provide essential insights about what it is like to live with and fight their disease.”

The new law is giving a boost to patient-centricity or patient-centered care. The federal Institute of Medicine defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” The Cures Act goes a step further, involving the patient perspective more fully in the pharmaceutical and medical device development process.

Linguists identify groups of people who communicate according to shared rules of interaction and knowledge as a “speech community.” Health care social networks are speech communities and are a rich reservoir of the patient perspectives. For example, in the Scleroderma Foundation Support Community on Inspire, patients and caregivers routinely discuss, in detail, subjects ranging from their lab testing results to clinical trial design. As a community member noted,

The problem with the doctors? Some are practicing insurance and some really do not understand this disease. We need to educate our doctors! I am learning to speak their language and I am getting a glimmer of hope that they really do understand the complexities of this monster.

This member is becoming bilingual in “medicalese,” and yet, the language of patients is even more nuanced. Instead of simply using medical terms, patient-centered language accommodates the kind of information-sharing that comes most naturally to us as human-beings: storytelling and metaphors. This community member refers to their treatment experience as a “glimmer of hope” and their scleroderma symptoms as the “complexities of this monster.”

Health care organizations must adapt their communication and information exchange strategies, employing both the terminology of the medical community and stories and metaphors in a relatable way. Patient-centric language recognizes the person independent of their condition, their linguistic styles, motivations, and emotions. It’s about their life, not their disease.

Kathryn Ticknor is a linguist and senior research manager, Inspire.

Image credit: Shutterstock.com


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