Forget Medicalese: Helping HCPs learn to speak “patient”

Kathryn Ticknor kathryn@inspire.com

Abstract

A key challenge to improving patient-centricity is effective information sharing. In one recent study of cancer patients, 29% reported not receiving enough information about cancer treatments, 48% reported problems in getting health information and 25% said they were not involved in decisions as much as they desired.
Social networks, however, are helping bridge the gap. On Inspire, a network of nearly a million patients and caregivers, about 40% of respondents reported asking for or receiving health care-related advice.
In this session, solo, with a patient advocate, or as part of a panel discussion, I will examine how those with serious or extended illnesses become “bilingual.” I will also discuss how other healthcare stakeholders, particularly doctors, can better learn the language of their patients to improve outcomes.
Key recommendations based on this research:
Listen first: understand the words, metaphors, and narratives that convey what is most important to them.
Remember there is no universal patient. Try replacing the word ‘patient’ with a proper noun or name.
Don’t use the doctor’s office as a litmus test for patient engagement. People often become most engaged when talking to someone they know share their experience.
Talk the Talk
People with serious illnesses acquire the language of medicine with far more complex medical terminology than their doctors realize. As one Inspire community member stated,
“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.”
Patient-centered language embraces the storytelling and metaphors that come naturally to us as human-beings: a “glimmer of hope” and the “complexities of this monster.”
“Person” Before “Patient”
While medical discourse often focuses on the patient, the language of this community focuses on the person. As one ePatient noted:
“There are multiple studies that show the earlier and more "aggressive" treatment is begun, the better chances of remission and "outcomes" (morbid term, but yes, this is the term used in studies)”
“Aggressive” and “attacking” often equate with risk. “Outcomes” invokes a methodical approach, separated from the person’s goal of improving his or her health and life.
The Voice of Experience
Evidence from across multiple threads indicates a common desire for firsthand experience:
“My rheumy is good but he even admits he does not know much about scleroderma... we are learning together. I am always telling him that I read this, that, & the other on scleroderma foundation. I also told him I am reading a lot of things that people like me write.”
(NOTE: We would be happy to invite an e-Patient and/or clinician to co-present, or we could join a panel discussion around patient empowerment and insights.) 
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