medical history

Do Changes Actually Create Change?

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Amanda Ehrhardt, MA, JAMA Network

Part of the purpose of the AMA Style Insider is to report on changes made in the AMA Manual of Style that aim to improve not only the editing process but also advance ethics and equity in medical publishing. Changes are not made arbitrarily but as a result of many experts building consensus on what represents best practices, and they’re made to create a widespread standard.

However, the manual can only release these standards to the world–what requires more follow up is whether the changes are actually implemented in publishing and how successful they are in creating new standards.

This year, in JAMA Network Open, several JAMA Network editors and staff published a cross-sectional study1 that examined race and ethnicity reporting across 3 JAMA Network journals before (January to March 2019 and May to July 2021) and after (January to March 2022) the implementation of the Updated Guidance on the Reporting of Race and Ethnicity in Medical and Science Journals2 in August 2021 (which was based on revisions made to 11.12.3 of the style guide).

Among the key takeaways were that the number of articles that reported race and ethnicity information for study participants increased by 10.4% from 2019 to 2022, more articles reported participants’ age or sex and gender, and the number of articles that defined categories included in the term “other” increased 58.1% from 2019 to 2022.

Additionally, the number of articles that listed racial and ethnic group categories by alphabetical order increased by 75.9% between 2021 and 2022, and there was a 24.1% increase in the number of articles that defined how race and ethnicity were determined.

Although this study had limitations (which are clearly stated in the article) and more improvement is needed, these results seem encouraging that AMA Style Manual updates are not made just to alter the day-to-day of editors across medical publishing, but to potentially create real and lasting change.

References

  1. Flanagin A, Cintron MY, Christiansen SL, et al. Comparison of reporting race and ethnicity in medical journals before and after implementation of reporting guidance, 2019-2022. JAMA Netw Open. 2023(6):e231706. doi:10.1001/jamanetworkopen.2023.1706
  2. Flanagin A, Frey T, Christiansen SL, et al. Updated guidance on the reporting of race and ethnicity in medical and science journals. JAMA. 2021;326(7):621-627. doi:10.1001/jama.2021.13304

September 5, 2023.

New Mpox Name for Monkeypox Disease

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Stacy L. Christiansen, MA, Managing Editor, JAMA

The recent outbreak of monkeypox disease (caused by the monkeypox virus), like COVID-19 and other pathogens before it, raised concern about disease names, particularly those that could negatively affect particular nations, populations, or animals.

The naming of diseases (and in this case, renaming) falls to the World Health Organization (WHO). After reports from individuals and countries raised concerns about the term “monkeypox” being racist or stigmatizing, the WHO met with concerned parties and invited public comment to rename the disease.1

The result is “mpox.”

The AMA Manual of Style will add the term “mpox” to the viruses section in the Nomenclature chapter (14.14) as well as information about the renamed clade I and clade II (formerly Central African and West African, respectively).2

We recommend dual reporting, such as mpox (monkeypox), at first mention to ease adoption of the new terminology. Other organizations, such as the Centers for Disease Control and Prevention3 and AP Stylebook,4 have also announced their adoption of the updated terminology.

The monkeypox virus name has not yet been changed. The International Committee on the Taxonomy of Viruses is responsible for that terminology,1 and when new nomenclature is announced we will update the Manual accordingly.

References

  1. World Health Organization. WHO recommends new name for monkeypox disease. Accessed December 1, 2022. https://www.who.int/news/item/28-11-2022-who-recommends-new-name-for-monkeypox-disease
  2. World Helath Organization. Monkeypox: experts give virus variants new names. Accessed December 1, 2022. https://www.who.int/news/item/12-08-2022-monkeypox–experts-give-virus-variants-new-names
  3. US Centers for Disease Control and Prevention. Monkeypox. Updated November 30, 2022. Accessed December 1, 2022. https://www.cdc.gov/poxvirus/monkeypox/index.html
  4. The Associated Press. mpox. AP Stylebook. November 30, 2022. Accessed December 1, 2022. https://www.apstylebook.com/ap_stylebook/mpox

Updated Guidance on Reporting Race and Ethnicity: Let’s Start With the Why

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Kim Penelton Campbell, BS, JAMA Network

I have used many adjectives to describe myself, but I’ve never referred to myself as other. When teachers called my name during morning attendance, I responded by saying “Here.” I never said, “Invisible.”

In medical literature, the failure to fairly and respectfully recognize and include individuals of all races and ethnicities can severely adversely affect patients’ lives and the quality of care they receive. It can misinform clinicians. It can compromise the credibility of a journal.

This means that race and ethnicity data should be reported in a way that encourages fairness, equity, consistency, and clarity in medical and science journals.1

Changing the b in Black and the w in White to uppercase lettering when describing race is not about mere political correctness—these changes are part of a conscientious movement toward equitable delivery of health care services to all people.

The objective of this post is to emphasize that updated guidance about the reporting of race and ethnicity is important, not because the AMA Manual of Style says so, but because inattentiveness to these changes can contribute to unconscious bias and ultimately affect how patients are treated or unintentionally mistreated.

Bias, when unintentional, is not mitigated—it remains bias all the same. Unintentional bias can occur simply because the writer or editor is removed from the patient’s life experience. When the writer or editor is unaware, they may not recognize how insensitive wording can affect the reader.

Example: “Adherence to the prescribed medication was higher among White patients than among Blacks.”

Consequence: Does this mean that if you are White you are a patient but if you are Black you are nothing? What is a Black?

When a person is called a Black instead of a Black patient or a patient who is Black, the wording detracts from that person’s humanity.

Likewise, use of lowercase lettering for Black and White, as well as referring to people as minorities instead of as members of a racial or ethnic minority group, also diminishes their humanity. Stating race or ethnicity in noun form can be interpreted pejoratively and is akin to labeling patients by their disease (eg, the blind, schizophrenics, epileptics) instead of putting the individual first (eg, a person with schizophrenia).2 Other things that can be interpreted pejoratively and should be avoided are using the term mixed race, which can carry negative connotations, instead of multiracial or multiethnic, merging race and ethnicity with a virgule (ie, race/ethnicity) rather than recognizing the numerous subcategories within race and ethnicity with the term race and ethnicity, and using abbreviations for racial and ethnic terms. Although the writer or manuscript editor may not have intended to negatively portray a group of people, the potential effect on readers remains unchanged.

  • To potential authors, the absence of a single word can indicate that a journal is insensitive to the health care needs of a population of patients.
  • To clinicians with the same racial or ethnic background as the one negatively represented, this can promote the inference that the journal has no diversity on its editorial board or staff.
  • To a practicing physician, this language can translate to offensive or insensitive communication when speaking with a patient or a patient’s family member.
  • To a patient, this wording can indicate that the medical community views individuals from their racial or ethnic group as nonpersons—unseen, unconsidered, and uncared for.
  • For all of these individuals, this can deepen a sense of mistrust.

Language that excludes a racial or ethnic group can subtly influence a medical trainee to “unsee” the humanity in people who are from a different background. If their research and educational sources are written or edited without intercultural competence, the medical trainee may unintentionally miscommunicate or make incorrect assumptions about patients from other backgrounds. This breach can interfere with a clinician’s understanding of the patient and, in response, impede the patient’s trust in the clinician.

Among some patients from communities that have been medically underserved or ignored, information about medical mistreatment can transcend generations. Past miscommunication can lead to mistrust, which can then lead to fear.

A family may never forget that Grandma never came home from the hospital and that no clinician took the time to explain why. Although this family was made to feel invisible because of miscommunication, it is quite possible that the clinician intended no disrespect and had no knowledge of how the family was affected. A patient with a historic burden of oppression can potentially interpret disrespectful communication as an initial step down the road to medical abuse.

My godfather once expressed such fear. He was Black, the clinicians were White, and he had grown up in Mississippi during the 1940s. Although I asked, he refused to ever repeat details of what was said by these physicians many years ago. But decades later, when I was a teenager and a novice driver, my godmother phoned and urgently asked that I come to their home immediately to rush him to our local VA hospital.

On my arrival, she exclaimed, “I think he had a heart attack while gardening in the back yard!” I said, “I’ll call 911. The ambulance will get him there faster.” Then, she stopped me. She pleaded that I drive him there myself. As I rushed to his aid, she continued by telling me that he would die of fear if an ambulance came to their home. She told me that I must speak for him when we arrived, remain by his side, and do everything in my power to keep him calm.

He cried like a baby during the entire ride. He was afraid. He was humiliated about expressing fear in my presence. I did not know what to say. I just kept driving. My heart was broken.

This brief story is an example of deep-seated fear that some Black people experience in a health care setting, a fear that can only begin to be abated with a conscientious effort to ensure that language humanizes Black patients and patients from all racial and ethnic backgrounds.

How does one address suboptimal reporting on race and ethnicity?

  • First, follow the guidelines.
  • Second, write and edit with a raised antenna. Look for what is unsaid in addition to what is written on the page.
  • Try to interpret as if you are a person from a racial or ethnic group unlike your own. Think about how you would you feel as the subject or nonsubject of the article.
  • Consider how wording can be misinterpreted.
  • Consider how inattentiveness to detail can affect the health, safety, or life of someone who is misrepresented.
  • Edit responsibly, but without fear of respectfully questioning the author.

Remember: no one is invisible, and no one is other.

“Not everything that is faced can be changed, but nothing can be changed unless it is faced.”3

James Baldwin

References

  1. Flanagin A, Frey T, Christiansen SL; AMA Manual of Style Committee. Updated guidance on the reporting of race and ethnicity in medical science journals. JAMA. 2021;326(7):621-627. doi:10.1001/jama.2021.13304
  2. Christiansen SL, Iverson C, Flanagin A, et al, eds. Correct and preferred usage. In: AMA Manual of Style: a Guide for Authors and Editors. 11th ed. Oxford University Press; 2020:547-548.
  3. Baldwin J. As much truth as one can bear. New York Times. January 14, 1962: Book review 1, 38. https://www.nytimes.com/1962/01/14/archives/as-much-truth-as-one-can-bear-to-speak-out-about-the-world-as-it-is.html

A Blueprint for Science Editing

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As a high school student, I stumbled across A Blueprint for Teen-Age Living in a recessed shelf of the library. The book was older than I was with a spine unbroken. Despite these red flags, I believed this William C. Menninger author might have some wisdom for the ages.

The breezy illustrations failed to track against the daily dramas unfolding around me in those years, and its advice did not seem to be applicable to peers. No one else was consulting a book on how to behave. One of the 7 signs of maturity was the ability “to deal constructively with reality.” Real life never arranges itself as in a guide to behavior, so to deal with reality, I began to disregard the Blueprint advice. Let’s just say that A Blueprint did not open any doors.

Happily, as a manuscript editor, I have access to guidebooks that not only open doors but also resolve questions. With the impending arrival of the AMA Manual of Style 11th edition comes the opportunity to take a brief peek at the first edition, which is of about the same vintage as that guide for teenagers.

A reasonable facsimile.

The typeface on the cover is, like the illustrations in A Blueprint, deceptively breezy. The book gets down to business. Even a quick look shows that the book arranged itself according to the real life of an editor. Written by director John H. Talbott, MD, for the Scientific Publications Division, this 70-page Style Book was produced in 1962 for an in-house audience. Stapled with a green cover, it has the look and weight of a fundraising cookbook from church. The Foreword (spelled “Foreward,” a potential mash-up of “foreword” and “forward”) indicates that numerous blank spaces appear on pages for additions the user may wish to enter. How thoughtful, but the version in hand must be a facsimile edition because all pages are jam-packed with scant space for additions.

The Style Book consists of 25 sections, mostly about the conventions of punctuation, with excursions into italics, laboratory values presented as cc instead of mL, drug names, and proofreader’s marks (perhaps the most constant of all sections). The Style Book shouts. CORRECT USAGE. INTERROGATION MARKS. FOOTNOTES. What became of the cover’s breeziness? The CORRECT USAGE section 9 lists “lipid: noun” and “lipoid: adjective,” and “mucous: adjective” and “mucus: noun.” These distinctions have evaporated over the years. In contrast, Section 9.16 advises for “over”: “‘more than’ preferred when numbers are used,” which appears to be an eternal directive.

The current manual directs us not to use a colon if a sentence is continuous without it. No such ruling appears in the first edition, which mentions colons as an indication of an explanation or enumeration to follow, as an introduction to a formal direct quotation, or to separate numbers in time of day, biblical references, and parts of numeric ratios. The book does use colons even when the sentence would be continuous without. In at least one place, the verb “are” is followed by a colon then its predicate nominative string.

One change that won’t surprise those of us in house is the guidance about numbers. NUMBERS 16.00 indicates “In the text all numbers from one through ten should be spelled out.” Current style is to use numbers, which still surprises many authors who return proofs with the instruction to spell out numbers. Another minor change is in capitalization after a colon. CAPITALIZATION 4.00 directs that the first word after a colon in a reference gets capitalized. Now the opposite is true.

In current Common Usage, “utilized” is not preferred because “use” is concise. The Style Book has plentiful examples of “used,” but “utilized “makes at least 1 surreptitious appearance.

It may sound odd to personify a book, but the Style Book has become surer of itself in the last 58 years. I believe it must have gone through the 7 signs of maturity. The original Foreword claims that “Few of the rules contained in this book are inviolable” and that the book “is not to be static,” modest claims presented with a certain authority, not to mention an admirable realism. The current Foreword focuses on the need for communicative writing and the manual’s standing as a more extensive and comprehensive manual than earlier editions.

The upcoming Foreword characterizes the manual as indispensable for medical journalism and communication, which embodies being “not static.” The new manual is 17 times the size of the 1962 edition, whose Foreword also presented the optimistic expectation of a new edition every year. Unlike A Blueprint, the community of users was accurately assessed. I imagine that even in 1962, people who consulted the Style Book felt like part of a community centered around this makeshift blueprint for science editing. Now the community of users extends around the globe. The AMA Manual of Style also opens doors, not just for editors but also for conversations between editors and authors.–Timothy Gray

The Biting Edge of Science

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After reading Gabriel’s last post regarding modern preconceptions of premodern physicians and caregivers, I was reminded of an old New Yorker article on leeches that I had only recently read. (I used to subscribe to the New Yorker and have a backlog of old issues.) The article is about an American-born zoologist, Roy T. Sawyer, who was reintroducing the ancient practice of using leeches for medicinal purposes. Sawyer is the founder of Biopharm (an international company and leech farm based in Hendy, South Wales in the United Kingdom) and the author of Leech Biology and Behaviour. In 1983, he created Biopharm with the goal of identifying all the curative chemicals in the leech.

The earliest references to the medicinal uses of leeches appear in ancient Sanskrit writings. Indian physicians applied leeches to snakebites and boils and around diseased eyes. Asian healers mixed dried leeches in water for a variety of symptoms. However, just like bloodletting and trepanning, the use of leeches in medicine came to be viewed as barbaric and devoid of any legitimate purpose. Sawyer has helped to change the misconceptions many hold about the medicinal uses of leeches.

There are more than 650 species of leech. Hirudo medicinales is the primary species that is used for medical purposes. In the course of writing his book, Sawyer became convinced that the medicinal uses of leeches in the past were “based on a high degree of evolutionary adaptation.” In 1884, a British physiologist identified the anticoagulant hirudin in the saliva of H medicinales. Subsequently, it was purified in the 1950s and cloned in 1986.

Like most species of leech, H medicinales has 3 jaws designed for sucking blood, and each jaw has about 100 teeth.* These “medicinal leeches” secrete saliva containing several chemical compounds that are injected into a wound while it is feeding. As already mentioned, hirudin is a powerful anticoagulant; calin is another chemical (ie, a platelet adhesion inhibitor) that is responsible for prolonged bleeding, and it is this continual flow of blood that can provide the time needed for a body part or appendage to reestablish its own circulation after microsurgery. The leech decongests blood as it feeds and promotes continual decongestion long after it has finished feeding and has dropped off.

Roy T. Sawyer’s findings seems to be in line with the finding of the 2 researchers at the University of Nottingham mentioned in Gabriel’s post, the ones who made that surprising medical discovery in an enigmatic 1000-year-old text called Bald’s Leechbook. Also, I like the slogan of Sawyer’s company, Biopharm Leeches: “The Biting Edge of Science.”—Paul Ruich

 

 

*Editor’s note: I think they’re kind of cute! 

 

Magic or Medicine?

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I am a serious news junkie these days, and I am never satisfied by the stripped-down daily brief or casual perusal of the headlines. I want the digging-into-the-deep-marrow kind of in-depth reporting that seems to be in decline in our instant-gratification-obsessed culture—the kind that takes months of investigation and hard work to uncover, and real talent to produce and present cohesively. I have found that one of the most enjoyable ways to quench my thirst for this type of journalism is in the form of podcasts. For culture and politics The Center for Investigative Reporting’s Reveal is absolutely on point, as is Politico’s the Global Politico. If you are a health care policy wonk, the new podcast put out by vox called the Impact produces very compelling stories on how policy impacts human lives. Oh  hey, and did you know that the JAMA Network also produces a podcast series where you can catch up on the research, opinion, and educational content from across all our journals while on your daily commute or during your workout?

For me though, the absolute best example of the kind of work that a podcast can do is to be found in WNYC’s Radiolab. This is a highly entertaining and effective show where culture, science, and the humanities converge in ways that are entertaining, enlightening, and often deeply moving.

It was on Radiolab that I encountered a fascinating story that encompassed some of the questions central to my own scholarly interests: ancient texts and the intersections between superstition and science, magic and modernity. The episode is called Staph Retreat, wherein we learn of 2 researchers at the University of Nottingham who make a surprising medical discovery in an enigmatic 1000-year-old text called Bald’s Leechbook.

The story centers around a bioscientist who studies history as a hobby and a historian who dabbles in bioscience in her spare time. The pair share a fascination with the medical text and decide to use their combined talents to put one of the remedies to the test in a scientific study. The remedy is for what appears to be a staph infection.

Remarkably, they found that the remedy was efficacious in treating Staphylococcus aureus in an in vitro model of soft tissue infection and even killed  methicillin-resistant S aureus (MRSA) in a mouse wound model. You can find the peer reviewed findings of their study published under an open access license in mBio here.

At a time when the dangers of antibiotic-resistant bacteria are becoming more apparent and urgent, is it possible that ancient texts may hold novel approaches to keeping our armamentarium apace with the evolution of these resistant infections? That may be a stretch, but it does open up a whole new area of study, ancientbiotics, which could theoretically yield new treatment options for increasingly resistant bacterial infections.

Perhaps equally important,  this scholarship has implications that pertain to our modern conceptions of premodern physicians and caregivers. These researchers discovered that the efficacy of the remedy was decreased if any one of the ingredients was removed, implying a synergistic activity of the entire combination. This highlights a level of rational methodology that is often denied to premodern medical professionals by modern medical historians.—Gabriel Dietz