5 Tips for Equity and Inclusion in Medical Writing and Editing

colored-pencils-374771_1920

Talking so everyone can hear

We have heard the words “equity” and “inclusion” many times in recent months. But we may not all have connected them with our work as writers and editors in health, medicine, and science. How can medical communicators help create a more equitable, inclusive world?

As writers and editors, we can play a role in giving all people the opportunity to understand and use health information so that they can participate in clinical trials, understand their health care providers’ instructions, and take other actions that help reduce and eradicate social, economic, and health disparities.

In her AMWA webinar, Writing for Equity and Inclusion, Stacy Robison, MCH, MCHES, president and co-founder of CommunicateHealth, Inc., explains that inclusive language acknowledges diversity, conveys respect to all people, is sensitive to differences, and promotes equal opportunities. This blog offers 5 Equity Tips about some ways to do all these things, with the goal of making audiences the most important part of the information we help to share.

Equity Tip #1: Start with plain language.

 Medical communication uses numbers, graphics, and educational techniques to convey scientific and health information and statistics. But most often, medical communication relies on words, whether in print publications, digital formats, or scripts for voiceovers, podcasts, and videos. Communicating in plain language, regardless of the format, is the best way to ensure people will understand.

While you may not be the originator of the scientific or medical information you present, you are likely more familiar with it than a member of the public. (Run something you write past your mother, best friend, or spouse if you want to test this.)

This means you suffer from the “curse of knowledge.” You know too much! The material you write or edit may exclude nonexperts because you have simply forgotten you know things they don’t.

Equity and inclusion start with considering your audience rather than yourself. For all audiences, write in everyday words. Use terms that people are used to seeing in print or digital formats. Avoid medical jargon such as “outcomes” or “follow-up visit” – that’s the language of insiders.

Equity Tip #2: Show your audience people like themselves.

Successful marketers know that the customer wants to see themselves reflected in the advertising. Patients, family members, and prospective clinical trial participants are no different.

Take a page from marketing’s book and show your audience people like themselves. A booklet on avoiding Zika virus should show pregnant women, preferably from the racial, ethnic, and socioeconomic groups in the area the booklet will be distributed. A web page about pediatric sickle cell anemia should include photos or illustrations of Black children.

Audiences may not trust your materials if the picture they present is not accurate. A New Zealand health organization created an information sheet on breast self-examination for the country’s indigenous Maori women. The illustrations were redrawn after a focus group remarked that “these look like white women’s breasts.”

In addition to race and ethnicity, diversity in health communication includes reflecting age, gender, sexual orientation, ability and more. It requires due diligence – actually learning about the people for whom we write, addressing their concerns, and portraying them in graphics and tools rather than creating materials for a generic “patient.”

Equity Tip #3: Be curious and listen.

As writers and editors, we have a responsibility to consider the content we write and edit. This usually means being curious about the audience. Where do patients in this area come from? Are they urban, rural, or both? What are the main ethnic groups that have immigrated here? What is the ethnic heritage of long-time residents? Are our patients and family members older adults, or do we mainly serve children and young families?

Here are some examples of how to help your clients foster equity and inclusion in their documents.

  • An information sheet says, “Make sure your child’s bedroom is dark and quiet.” You can ask the client, “Do all the children you see have their own bedrooms? Do they share bedrooms or sleep on a couch, or in other rooms? Are city noise or lights ever a problem?”

    In this case, we want to be inclusive of families in urban environments, cultures where family members share sleeping quarters, and socioeconomic circumstances that affect daily – and nightly – life.

  •  A booklet provides only website links for more information. You may ask your client, “How old are the people who will use this booklet? Do they all have access to the Internet? Are they all experienced digital-information users? Are there any other formats they like to use, such as printed materials or a phone call with a nurse?”

    In this case, we want to level the playing field – ie, foster equity – for older adults and those with less access to digital resources. (This may include people living in rural areas where technology is less developed than in cities.) Many health conditions are more prevalent at older ages, so chances are quite good you will have older-adult users.

Equity Tip #4: Consider culture when deciding what to include and say.

If you read The Immortal Life of Henrietta Lacks, about the Black woman whose cervical cancer cells were taken for research without her consent, you likely gained insight into the negative associations some racial and ethnic groups have with clinical research. Physicians removed Lacks’ cells without her knowledge or permission and her family members were not told until many years later.

Unfortunately, this story is not unique. The Tuskegee Institute infected Black men with syphilis for research purposes. Native Americans were deliberately given infected blankets as part of a plan to reduce or eliminate their populations in the 19th century United States. These experiences have fueled a cultural mistrust among certain ethnic groups that enables myths and misinformation about medicine and science to flourish, creating barriers for people trying to deliver correct messages to the public.

All people may have questions and concerns about participating in clinical trials and scientific research, but people from some groups may have stronger historical reasons than others for mistrusting doctors, researchers, or other health care workers. It is important to emphasize that taking part in clinical research is voluntary and participants always have the choice to drop out of a study. For studies recruiting Black Americans, placing this wording more prominently and frequently may be valuable and important. Understanding the frightening history of Native American tribal members and medical treatment is important in creating materials for tribal health care.

Clearly communicating medical information and providing evidence-based information is an important responsibility for medical writers and editors. Considering culture in preparing materials can help dispel myths and engender trust.

Equity Tip #5: When in doubt, just ask.

What do people want to be called? How do they refer to themselves? Honoring the preferences and self-designations of those we work for and write about is a key to inclusive language and the practice of equitable treatment. When we dive into the AMA Manual of Style for answers, we cannot overlook the real patients who visit our websites and clinics.

As cultural outsiders we often have incorrect ideas about what we think people of different ethnicities want to be called. For example, I heard on National Public Radio that we should properly refer to our Spanish-speaking neighbors as “Latino,” “Latina,” or “Latinx,” rather than “Hispanic,” which alludes to Spanish conquerors. However, when I had a conversation with my neighbor Veronica, to my surprise she referred to her ethnicity as “Hispanic.” Should we impose the language we have been taught is proper on our conversations? Or should our neighbors set the terms when talking about their own heritage? We must choose the latter.

This is similar to the issue of personal pronouns. What do our audience members prefer to be called? Clients are using the singular “they” much more often now, and I encourage this (Shakespeare used it). Patients and other constituents are telling us what pronouns and names they prefer us to use. In the eye clinic where I worked, we changed “Robert” to “Valerie” when one patient transitioned from male to female. It was as simple as changing the name on her chart. Valerie simply told us her new name.

Listen first. Write second.

These equity tips may seem simple, and in many ways they are. As we aim to write so everyone may hear, let’s make a conscious effort to employ respect and precision, to ask questions, to pay attention to what people call themselves, to understand what offends them, and, importantly, to be willing to change our minds when we realize our preconceived ideas are incorrect.


Join-AMWA_800x100_CTA03

 

April 26, 2021 at 10:00 AM

Genevieve J. Walker, PhD, PC

Genevieve Walker, PhD (formerly Genevieve Long), is a freelance medical communicator who specializes in writing and editing in plain language for patients and other health care consumers. The owner of Bridge Health Communications, Genevieve began her medical writing career in 2002 and joined the American Medical Writers Association that same year. She is a past president of the Northwest chapter of AMWA and lives in the Columbia River Gorge area of the Pacific Northwest, where she appreciates the diversity of rural-urban, multiethnic, and cross-cultural influences on daily life. Genevieve teaches the AMWA credit workshop Writing and Designing Materials for Patient Education for AMWA and also teaches in the Medical Writing and Editing certificate program at the University of Chicago’s Graham School. In her spare time, she has tutored adult literacy learners. When she is not working on projects, she enjoys reading mysteries set in the American West, traveling with her husband, fly fishing, and keeping track of four lively Labrador Retrievers.