Being the architect of legislation to include a patient's dense breast tissue, the strongest predictor of mammography missing cancer, in the patient's mammography reporting results, I am compelled to respond to a recent study in JAMA: "Study Finds Poor Understandability of Notifications Sent to Women Regarding Breast Density."
In this study, the authors conclude, "Efforts should focus on enhancing the understandability of Dense Breast Notifications (DBNs) so that all women are clearly and accurately informed about their density status, its effect on their breast cancer risk, and the harms and benefits of supplemental screening..." of which I agree.
It's outlandish, however, that the authors also conclude the understandability of breast density notifications is poor while severely understating the importance of physicians discussing test result findings with their patients.
Moreover, why don't the authors question the readability levels of all medical reporting results that patients receive? Further into this article, and for your enlightenment, I've compared a few test results and their readability.
It's worth repeating that the pros and cons of breast cancer screening, including mammography and adjunct screening and the patient's individualized masking and causal risk factors, must occur between patient and health care providers, resulting in informed personalized screening and breast health decisions.
Additionally, to place the duty of a patient's understanding of the impact of dense breast tissue on the reliability of breast cancer screening results, by isolating several sentences, without assessing the readability of the entire report, is short-sighted. Furthermore, receiving a medical reporting result, lacking discourse between patient and her doctor, regardless of the patient's educational level, cultural heritage or income, is just bad medical practice.
The AMA code of medical ethics Opinion 10.01 is clear in the importance of Patient-Physician Discourse. Fundamental Elements of the Patient-Physician Relationship states:
From ancient times, physicians have recognized that the health and well-being of patients depends upon a collaborative effort between physician and patient ... Physicians can best contribute to this alliance by serving as their patients' advocate and by fostering these rights...
The density reporting movement using legislative means was pioneered in Connecticut after its passage of the first density reporting law in 2009. Its intent was to report to patients the same information that their health care providers have about their breast cancer screening results. It was never intended to replace conversations, but to enhance them, leading to shared screening decisions between a patient and health care provider. The disclosure of dense breast tissue with the understanding of its impact empowers the patient about an aspect of breast screening that may be material to a missed, delayed and advanced-stage breast cancer. Absent a discussion about the masking risk of mammography in women with dense breast tissue, gives women a false perception of their breast cancer screening by mammography alone, with its purpose to discover cancer at its earliest stage in its natural history.
My professional career by choice was in education, as a teacher, building and central office administrator, a state department of education official and adjunct lecturer at the University of Connecticut. My patient advocacy mission was born out of a serious and potential fatal condition I faced with an advanced stage breast cancer diagnosis within weeks of my 11th normal mammogram. The masking of my now stage 3c breast cancer for years by mammography was only disclosed after I questioned my docs as to why my mammograms did not discover my cancer earlier. After my astonishing discovery of a decade of research prior to 2004 of the masking of dense breast tissue on mammography, I asked my team of health care providers to consider reporting a patient's dense breast tissue as part of the mammography reporting results and discussing its impact on breast cancer screening. Each of their refusals led me to the Connecticut legislature.
I spent a decade in my educational career developing effective lessons, including conducting readability levels to educate my students with disabilities and literacy challenges, ensuring that they fully comprehended the materials contained in textbooks. After reading the JAMA study, I conducted my own study on the readability level of my latest medical reports. Each of my reports, except my "Happy Gram" mammography 'normal' reporting results from 2003, followed within weeks by the shocking diagnosis of my advanced breast cancer, occurred with dialogue between my doctors and me.
Average Readability Levels
Happy Gram mammography results before Dense Breast Notification: 12.9
Pap results: 10.7
Pathology results of Thyroid: 17.3
American College of Radiology (ACR) recommended lay letter without density reporting: 9.0
ACR Letter isolating the Dense Breast Tissue Reporting Language: 8.0
Genetic Testing results: 11.4
The density reporting legislative wording is negotiated among many, including physician trade organizations and its lobbyists, legislators and patients. I've had many discussions, with limited success, about our non-profit organizations' recommended language using 'cancer' as opposed to 'abnormalities.'
Dr. Kressin and colleagues, while isolating a small aspect of a much grander scale of communicating medical results to patients, sheds light on one of the fundamental elements of the patient-physician relationship, resulting in the health and well-being of patients. Might it be time for medical trade organizations to visit the readability and understandability of all medical reports, stressing to its constituents, as patient advocates, that the optimal course of action is the continual patient-physician discourse? Conversation in lay terms and culturally appropriate to the patient, resulting in personalized informed decisions seeks to avoid disparities in health decisions.
My dozen years as a patient and breast health advocate have taught me that patients are seeking all the unbiased facts, based on the research, about the masking and causal risk of breast cancer. These educated and informed conversations, regardless of whether the patient resides in a state with a mandate to report density, may make the difference between an early and advanced cancer diagnosis and in some instances death. Let's talk...