Communicating Care Emma Barrett-Catton

My dear friend never knew what kind of cancer she had or the prognosis... saying "the doctors were just too busy to talk."

My brother thought he had untreatable cancer for 3 months when actually the doctor had told him he had cells that appeared to be precancerous and needed to be monitored so he should return in 3 months. He is hard of hearing and had gone to the appointment alone.

Health Literacy

Background

Health literacy is a measure of a person’s ability to access and understand information about their health. It is estimated that 36% of people in the United States have basic or below basic health literacy [1,2]. Health literacy can have a large impact on patient outcomes, as patients are less willing and able to comply with care instructions that they do not understand [2,3]. For instance, numerous studies have found that low health literacy is associated with a decreased ability to properly take medications, a lower likelihood of getting preventative treatments, and a higher risk of hospitalization [2,3]. The issue of health literacy is compounded by the fact that people interacting with the medical system are often experiencing pain and anxiety, which further reduces comprehension of health communication [4]. As a result, clear communication strategies are vital in healthcare.

Health Literacy and Libraries

Health literacy is an issue that librarians are uniquely situated to address. Libraries are locations of information access—people go to the library to answer questions they may have, including questions about health care. As a result, public libraries have been a public health resource, helping to improve health literacy [5]. However, addressing health literacy in libraries from the patient side only helps the people who feel comfortable using library resources or asking for help from librarians. It does not help those who may feel less comfortable in library spaces, do not know that libraries are a source for health information, or do not have the time to pursue answers to health questions. Libraries can address this issue by tackling health literacy from a clinician rather than patient viewpoint.

Libraries, especially medical and academic libraries, can work to address health literacy by educating clinicians on the importance of plain language in health communication. They can also provide guidance on what we mean by “plain language” and “clear health communication” and provide clinicians with tools to improve health communication. Some key changes that clinicians should implement are using active rather than passive voice, replacing technical words, removing anaphora, and shortening sentence length [6,7]. However, clinicians sometimes balk at making these changes as they feel they are “dumbing things down” for their patients [8]. As a result, one course of action for librarians is to highlight the importance of plain language on patient outcomes. One study found that presenting information about a child’s condition and treatment in the form of a illustrated children’s book improved caregiver comprehension and reduced anxiety [4]. Librarians should show clinicians the results of these randomized control trials when discussing health literacy and health communication. Ideally, this would lead to clinicians wanting to improve their communication strategies with their patients.

Plain Language Tools

Writing clear health communication is not easy, so it is vital that libraries communicate the ‘how’ along with the ‘why’ of clear health communication [8]. There are several key tools for improving health communication that libraries should highlight for clinicians. One is the CDC’s “Everyday Words for Public Health Communication” webpage [9]. This webpage allows clinicians to input clinical terms and the page will return a plain language definition for the term, along with example sentences with the alternative term. Another tool is plainlanguage.gov which contains plain language guidelines and examples [10]. The Center for Medicare and Medicaid Services also has useful guidelines for written health communication [11]. The Agency for Healthcare Research and Quality has a checklist for clinicians to use to evaluate how understandable and actionable health communications are [12]. There are also current projects based on automating plain language translations using machine learning that may effectively simplify online text for patients [6,7]. Clinicians can use these datasets to see examples of language simplification and apply these changes in their own practice. These tools make it easier for clinicians to translate their communication into language that is easier for patients to understand.

Data Physicalization Process

This data physicalization project focuses on addressing health literacy through clinician communication. The goal of this physicalization is to highlight the importance of plain language in health care and emphasize that clear communication is part of effective care. In this physicalization, different instances of unclear and ineffective health communication are represented by layers of crochet.