To Fail or Not to Fail
How Doctors’ Language in Medical Records Impacts Patient Care….. and Rare Disease Drug Development
Patient advocate, Casey Quinlan, posted an article a couple of weeks ago on LinkedIn and I can’t stop thinking about it. The author of the article, Emily Bradley, wrote a blog piece about the clinical language that is used by doctors in recording patient visits that can negatively affect the direction of a patient’s care and medical community in general. The article is poignant and insightful with a dose of solution.
Emily Bradley noted a number of incidents in which her disease’s impact on her life, as well as on her financial situation and her job, forced her to miss doctor’s appointments or forego expensive treatment options. Despite her best efforts to communicate this to her doctors, when she looked at her medical records, the words she read made her feel unseen and unheard.
Can we change this practice?
“Perhaps instead of “patient failed X treatment” we can begin with “X treatment failed for patient” or incorporate more phrases such as “patient elected to…” and “patient shared X regarding medication XYZ.”
I relate to this from a rare disease mom point of view, from my job point of view - at TREND Community, trying to help patients and caregivers with their daily struggles while providing crucial patient experience data to the companies that can get them the treatments they need -and, of course, from the point of view as a patient myself.
In fact, could this language barrier also be preventing patients from gaining access into clinical trials? Is this kind of language not only hindering individual patient care, but perhaps the drug development process at large? And in the rare disease world, with so many of the diseases classified as life threatening, this is a very serious problem.
This is a heads up to all of us to:
- Ask to see your medical record.
- Be thoughtful with the language that you use with your doctor.
- Ask your doctor to be thoughtful with the language that she/he uses in your record.