Abstract
This is part of a monthly editorial series discussing current issues affecting children and their caregivers with thoughtful consideration of the history of pediatric medicine. If you are interested in contributing, please reach out to the editor of this journal.
Patients and their guardians have had access to their medical records since the OpenNotes rule of the 21st Century Cures Act took effect in 2021. 1 Previously, patients had to request medical records, and notes were written for interprofessional education and communication. 2 The language of health care providers is now visible to patients and families. Patients have shown support for note access, highlighting improved recall of care plan details and increased feelings of integration and autonomy.3–5 Patient and guardian note access has also shown advantages in pediatric settings by increasing caregiver understanding and improving caregiver-physician relationships.6,7 However, patients’ easy access to their physician's words inevitably alters the physician-patient relationship. It is important to use accessible notes as a tool to improve patient trust by eliminating confusing, stigmatizing, and potentially hurtful terminology and implementing clear, patient-centered language.
One area where language can be improved is words with commonly understood meanings in everyday vocabulary, but different meanings in medical situations. Words like “positive,” “remarkable,” and “impressive” have good connotations in daily settings, but in health care settings, often indicate adverse findings. The opposite is true for “negative,” “unremarkable,” and “unimpressive.” This can be confusing for patients: in a study of non-medical professional adults, there was variable understanding of terminology. For example, 20.5% of respondents understood the meaning of “the findings on the x-ray were quite impressive,” and 66.5% understood “your nodes are positive.” 8 This confusion can be particularly distressing in child neurology. Patient guardians reading that a brain magnetic resonance imaging was “negative for tumor” may understand “negative” as worrisome news. In neurologic screenings, a child may be “positive” for disorders like autism. It is more clear to describe these tests as “not indicative of” tumor and “concerning for” autism. Now that notes are accessible to patients, it is important to adjust language to not contradict commonly understood meanings, facilitating greater patient and guardian comprehension.
Descriptions of physical features also require precise, respectful terminology to prevent distrust and promote the best patient care. These descriptions are a key part of recognizing neurologic conditions and a delicate topic requiring careful language.9,10 This language shapes how parents experience their child's care and may undermine trust if perceived as disrespectful. Patient-centered care should extend beyond the bedside and into formal documentation. One example involves Down syndrome, where “simian crease” has been used to describe palmar crease variations for decades. 11 This term refers to resemblance to non-human primate palm creases, carrying offensive connotations that become more damaging in the OpenNotes rule era. 12 Physicians should utilize the inoffensive, precise alternative “single transverse palmar crease” when communicating with guardians of their young patients. Similarly, in Cornelia de Lange syndrome, excess hair growth can be described with specific terms like hirsutism or hypertrichosis rather than bluntly as “hairy face and limbs.” These language shifts avoid judgment and emphasize objectivity. Eliminating potentially hurtful terminology surrounding physical features strengthens relationships between physicians and patient guardians.
These documentation changes are very valuable, but we must recognize the burden they place on physicians. Implementing phrasing shifts on a large scale requires time and effort in a note-taking process that is already long and consuming. Promoting accessible, clear language on an institutional level through education on documentation and universal note language guidelines can help make these shifts more feasible and efficient. For example, electronic medical record systems such as Epic currently identify confusing abbreviations and could also be adapted to highlight misleading terminology, reducing clinician burden. We must also consider inequities faced by families who do not speak English and have historically faced significant barriers to understanding clinical notes. As health care providers, we can advocate for training regarding patient-friendly language to extend to interpreters who translate medical documentation, increasing accessibility to notes for our minority patient populations. In the OpenNotes rule era, standardizing translated notes is not just a communication improvement; it is an equity intervention.
Finally, the OpenNotes rule provides an opportunity for physicians to share counseling and education with patients and families. Thoughtful use of language in documentation fosters trust and communication between physicians and patients or their guardians. These notes create space for advocacy for the patient's needs and empathy for their experiences. Physicians can use notes to explain how care may be provided outside of medical visits, such as by sharing further details on strategies to improve sleep, headache management, social reciprocity, and other target areas. We can take advantage of these benefits and optimize note sharing by making necessary changes to word choice and prioritizing accessible and patient-oriented language.
