Health Communication Should do no Harm: Weight and Diabetes Stigma in Online Health Content

Abstract

Stigmatizing language in online health communication negatively impacts patient experience and health outcomes. Journals, medical associations, and patient groups have affirmed the use of person-centered language; however, those changes have not been applied broadly to health systems’ patient-facing materials. Health communicators and providers can work together to develop medically accurate, person-centered content that avoids stigmatizing people, improves self-management of personal health, and enhances the online patient experience.

Introduction

Being treated with respect is among the top three things people say influence their trust in the healthcare system. ¹ Typically, healthcare providers are responsible for building trust through patient encounters. However, before stepping into the provider's office, many people go online to do preliminary research. Therefore, those who develop online health communication have a significant responsibility and challenge: to build patients’ trust through word choice and tone without the benefit of nonverbal cues or back-and-forth conversation.

Health communicators have the opportunity to build patients’ trust by using person-centered language to remove stigma, thereby improving the patient experience. For the purposes of this paper, we focus on obesity- and diabetes-related stigma. To improve how patients experience our online health communication, Cleveland Clinic explored the language we use to ensure that our word choices respect every person. We developed a task force of editors and providers to review language that could be stigmatizing and to find person-centered solutions. We seek to emphasize the humanity of people with all types of diabetes or obesity, for example, while providing the education and support they need to understand their bodies and manage their conditions.

Key Factors for Consideration

The Increasing Role of Online Health Communication in Patient Experience

Search engines are now the first place most people go when they have health questions—before all other sources of health information, including their physician's office. ² In fact, many people perform health searches on the internet either before a doctor's visit to determine if they need to see a doctor or after the appointment for reassurance or more information. ³ People with diabetes, in particular, are more likely to turn to the internet for information or support if they are having difficulty managing their blood sugar or have overweight/obesity. ⁴ We posit that this is at least partly because diabetes management is largely performed/enacted by individuals with diabetes, and they have to make management decisions multiple times per day.

These health information searches add up. According to a Google Analytics query, there were nearly 750 million sessions on ClevelandClinic.org from December 1, 2021, to December 1, 2022. Of those sessions, more than 500 million were to Cleveland Clinic's Health Library, and the remainder were to other pages on the site, as shown in Figure 1. Online health information thus presents a significant opportunity for us to set the stage for a person-centered patient experience and communicate our organization's values before the reader even sets foot in a healthcare facility.

Figure 1.

Traffic to Cleveland Clinic pages was up significantly year-over-year.

Stigma Exacerbates Health Disparities and is Associated With Worse Patient Outcomes

Stigmatizing words label and dehumanize people. Stigma reduces people to their medical conditions and treats them as though they are flawed or a burden. ⁵ It also negatively affects people seeking health services. Stigmatizing words can make people less likely to engage in healthy behaviors and less likely to return for follow-up care. ⁶

For people who have overweight/obesity or Type 2 diabetes, stigma has particularly negative effects. ⁷ Diabetes-related stigma adds to the psychological burden of the condition and can negatively impact self-management. ⁸ People with insulin-treated Type 2 diabetes can feel constantly judged and monitored, which may lead to psychological barriers to insulin use, less than optimal management of blood glucose, and, ultimately, negatively impact clinical outcomes.

More than half of people with Type 2 diabetes report experiencing stigma, which disproportionately affects people who have overweight/obesity and poorer self-reported management of blood glucose. Most people who experience diabetes stigma feel like their condition is related to a failure on their part and that they are a burden on the healthcare system. Compounding diabetes-related stigma, more than half of people with diabetes report experiencing weight-related stigma. ⁹

Person-Centered Language Principles Are Not Applied Broadly to Health Systems’ Online Patient-Facing Materials

Through language, the medical community communicates messages about identity, agency, and blame. ¹⁰ Medical associations, such as the American Medical Association, the American Psychological Association, the American Association of Diabetes Educators, and the American Diabetes Association, have amended their editorial policies to affirm the use of person-centered language.^10‐13 That is, they put the individual before their disease, as in, “person with diabetes” and “person with obesity.” However, have health education and communication efforts kept pace with these changes? Health materials that refer to “diabetics” or “obese patients” put the disease before the person. Grammatically, the disease functions as an adjective, or descriptor, in a way that seems to define the person by their condition. Such messaging can unintentionally reinforce feelings of blame and fear. ⁷ We need better, more respectful online health information and support for patients.

Recommendations

Develop an In-House Style Guide

Cleveland Clinic developed an editorial diversity, equity, and inclusion (DEI) style guide that defines our person-centered, respectful approach to patient-facing health education. To inform our language recommendations, our task force researched condition-related stigma and the growing role of online health searches in the patient experience. Our overarching goal is to provide health information that does not cause harm. It should not feel judgmental or exclusionary. We avoid using the terms “obese” and “diabetic” as adjectives and do not use the term “diabetic” as a noun. Instead, we put the individual before their medical condition, as illustrated in Table 1. We also avoid the term “control” as it relates to weight or diabetes because there are factors related to these conditions that patients cannot control. We recommend convening a task force of editors and providers to create an in-house (institution- or health system-specific) style guide to inform organizational communication.

Table 1.

Diabetes and Weight Stigma-Reducing Alternatives for Online Health Communication.

Stigmatizing language	Person-centered alternative	Reasoning
A diabetic	A person with diabetes	We avoid the use of “diabetic” as a noun.
An obese person	A person with obesity	We recognize that obesity is a medical condition and do not use medical conditions as adjectives.
Control of diabetes	Management of diabetes	We use the term “management” here rather than “control” because there are factors related to diabetes that patients cannot control. We want to empower patients, not make them feel bad about themselves.
Diabetic ketoacidosis	Diabetes-related ketoacidosis	We avoid the use of the term “diabetic” as an adjective.
Morbid obesity	Class III obesity (BMI ≥ 40)	We avoid the term “morbid” to classify obesity.

Abbreviation: BMI, body mass index.

Implement a Plan for Systemic Changes

A large health system has thousands of pages of content on its website, with new content created every day by writers in several departments. This volume creates opportunities for continuing education and systemic change. We implemented Cleveland Clinic's DEI style guide as part of our public-facing editorial policy, which explains our approach to person-centered online health content. ¹⁴

Since we publish online rather than in print, we can make iterative changes. Additionally, we can systematically audit our content for stigmatizing words. For example, an internal audit of our website run on SiteImprove in April 2022 yielded more than 5000 instances of the term “diabetic” and over 1400 web pages that needed editing according to our new, person-centered guidelines, as shown in Supplementary material. Therefore, we recommend systemic implementation of the in-house style guide as well as an initial round of audits to identify language that needs immediate attention.

Understanding the Importance of Internet Search Rankings

Stigma is pervasive and can be internalized, as reflected in the words people use to describe themselves. For example, people may still use the term “morbidly obese” to describe themselves, perhaps querying: “What does it mean to be morbidly obese?” or “What is morbid obesity?”. ¹⁵ That said, people with class III obesity are less likely to access medical treatment when they perceive weight stigma. As online health communicators, this puts us in a bit of a bind.

Online health content is a delicate dance between editorial and search engine optimization (SEO)—we want people to find the information they need. To do this, we have to use the language they use when conducting searches. Finding ways for our articles to rank on the first page of search results is hard enough without a constantly evolving vernacular.

We recommend balancing SEO needs with person-centered language by mentioning a stigmatizing search term once and immediately pivoting to newer, person-centered language. This teachable moment allows readers to learn the new terminology and begin taking it up on their own. It also gives us the opportunity to address stigmatizing language directly in our content—and show our readers that we are making conscious decisions to put their personhood first.

Search engines reward this strategy. Our class III obesity article ranks first for both “class III obesity” and “morbid obesity,” as shown in Figures 2 and Figure 3. From December 1, 2021, through December 1, 2022, this article had nearly 87,000 pageviews, as shown in Figure 4.

Figure 2.

A Google search for the term “class iii obesity” shows Cleveland Clinic's class III obesity page in the first spot.

Figure 3.

A Google search for the term “morbid obesity” shows Cleveland Clinic's class III obesity page in the first spot.

Figure 4.

Organic traffic (pageviews) to Cleveland Clinic's health information article on class III obesity has risen steadily since the article published in November 2021.

Recognize That it Takes Time to Adapt to Shifting Language Paradigms

Person-centered language sometimes necessitates using words as nouns that have been commonly used as adjectives. Spelling and grammar software systems (and editors) often assume this is an error, preferring “the overweight person” rather than “the person who has overweight.” While changing our language patterns is challenging, it is easier to do so with written, published words than in face-to-face encounters because we have the time to carefully consider words and can conduct audits. We recognize that these efforts may be most successful when complemented by a shift in the language used by in-person providers to match this respectful tone. We recommend ongoing continuing medical education (CME) with all stakeholders in a healthcare organization to help shift the tide toward universal adoption of person-centered language.

Conclusion

Research shows that using person-centered language positively affects the patient experience, as well as how people view themselves and manage their conditions. We advocate for a paradigm shift in the way we write about medical conditions—and the way we talk to people who have them. It is our responsibility as online health communicators to seek to do no harm as we provide medically accurate information—and use inclusive, person-centered language.

Supplemental Material

sj-tif-1-jpx-10.1177_23743735231171561 - Supplemental material for Health Communication Should do no Harm: Weight and Diabetes Stigma in Online Health Content

Supplemental material, sj-tif-1-jpx-10.1177_23743735231171561 for Health Communication Should do no Harm: Weight and Diabetes Stigma in Online Health Content by Jennifer L Lonzer, MA, Shannon Knapp, BSN, RN, CDCES, Chelsea Frey, BA, Ann Bakuniene-Milanowski, BA, Brittney Rohr, BS, Mary K Assad, PhD, Marcio L Griebeler, MD, and Leslie Heinberg, PhD, MA in Journal of Patient Experience