editorial policies

Patient Privacy

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Sometimes before I go to bed, I like to check in on one of my favorite YouTubers, Dr Pimple Popper (the nom de internet of dermatologist Sandra Lee), who posts videos of dermatologic procedures and skin care treatments. I particularly enjoy watching videos of dilated pore extractions, and I don’t mind watching lipoma extractions either (although I do sometimes fast-forward through the excisions). I know these types of videos can get viewers’ stomachs churning a bit, but I think it’s no worse than various photographs in medical journals I have worked at over the years. And because of my occupation, I do wonder about patient privacy and anonymity.

Patients featured on this YouTube channel may have a cyst near their eye or ask for blackheads to be removed from their cheek, and their faces are clearly visible. In many videos, Dr Lee chats with her patients, and although she sometimes edits out personal details, some of it stays. Dr Lee says that patients do sign consent forms before videos are published.

Similarly, when manuscript editors of medical journals encounter photographs of patients, we must review whether the photograph might intrude on patient privacy. Authors must obtain written permission from patients (or their legally authorized representatives) for any descriptions, photographs, or videos of patients or identifiable body parts and indicate that such consent was obtained in the Methods or Acknowledgment section. When I started in this field as an editorial assistant, I processed a manuscript that described a skin lesion on a patient’s back. In an accompanying photograph, the patient’s distinctive tattoo was visible, and I needed to ask the author to either obtain patient consent or have the photograph cropped because the patient (as well as anyone who knew he had that tattoo) would be able to identify himself. Results of imaging studies and photos of laboratory slides may also have identifying information that should be removed.

Protecting patient privacy also extends to what is in the text of an article. When editing case descriptions, case reports, and personal essays, nonessential identifying data (eg, sex, specific ages, race/ethnicity, occupation) should generally be removed unless the author has permission or the information is clinically or scientifically relevant and important. Authors and editors should not falsify or fictionalize details; doing so may introduce false or inaccurate data.

Read more about patient’s rights to privacy and anonymity in section 5.8.2 of the AMA Manual of Style.—Iris Y. Lo

Offensive Words and Apologetic Quotation Marks: Sorry Not Sorry

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News organizations everywhere had an important editorial decision to make in early January 2018 when President Trump categorized certain countries in a defamatory manner during a closed-door discussion about immigration in the Oval Office with Senators Dick Durbin and Lindsay Graham, among others.

  • “Trump decries immigrants from ‘shithole countries’ coming to US” (CNN headline)
  • “Trump derides protections for immigrants from ‘shithole’ countries” (Washington Post headline)
  • “‘Fox & Friends’ host called for Trump to clarify ‘s—hole’ comment shortly before denial” (The Hill headline)

In scientific reporting, as in politics and life, things sometimes get ugly, and when they do, we turn to apologetic quotation marks. In the examples above, the term shithole is a part of the story; without using the offensive term, the story’s meaning is lost. It’s interesting that these 3 examples apply the apologetic quotation marks in 3 different ways. The first example includes “countries” within the quotation marks, which is not necessary. The Washington Post example gets it right. And the example from The Hill is not fooling anyone. If you’re going to include it, include it. Crossing out a few letters in the offensive term is the literary equivalent to putting black bars over a patient’s eyes to make the patient “unidentifiable.” (←ironic use of apologetic quotation marks.) 

This is not a picture of my cat:

This is not an offensive word:

S—HOLE

You get the point.

The revised edition of the AMA Manual of Style will provide expanded guidance in the “Apologetic Quotation Marks” section of the Punctuation chapter, which currently only states that apologetic quotation marks are “sometimes used around words for special effect or to indicate irony.” Additional guidance will note that in some instances, the use of a potentially offensive term might be unavoidable if it is a direct quotation that is important to an article (eg, in a news story). In such cases, the offensive term may be published within quotation marks. The New York Times occasionally opens up its policy on including offensive terms in print. Ultimately, whether or not to include offensive language in an article is an editorial decision that comes down to how the term relates to the meaning of a story.—Lauren Fischer

   



Looking Forward to the 11th Edition

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At the most recent annual conference of the American Medical Writers Association, we received a sneak peek at some of the changes to come with the AMA Manual of Style 11th edition. AMA Manual of Style Committee Members Cheryl Iverson, Stacy Christiansen, and Annette Flanagin gave an overview of some highlights, including changes to the way references are styled, updates taking into account the growing presence of social media, and changes to nomenclature. Other topics included updates to corrections processes, clarification of authorship guidelines, and data sharing rules.

In this post, I thought I’d share some of the changes that I’m most excited about as an editor, many of which promise to make the editing process easier and more intuitive. Several new guidelines for styling references caught my attention. For example, electronic references in the current edition mirror traditional references with the addition of a URL in the middle of the reference and a date accessed at the end. The new edition will put URLs at the end of a reference, similar to how DOIs currently appear. Another welcome change is the omission of publisher locations from references to books and reports, which seems sensible given the multinational nature of publishing and the increasing move toward digital formats.

An update to the style of tables and figures was also covered in the presentation. Starting with the 11th edition, column heads in tables and axis labels in graphs will appear in sentence case capitalization rather than title case. Table and figure headings and labels in scientific publishing often contain a great deal of text, making it all the more important to display that text in a way that’s as easy as possible for readers to parse. In addition to saving space, the use of sentence case capitalization throughout figures and tables will make these elements appear more standardized and easier to read.

The new edition also makes some helpful distinctions between AMA style preference and alternatives considered acceptable. For example, it is now acceptable to use of “they” as a singular pronoun. In addition to circumstances in which “they” is a person’s preferred pronoun, this construction can also be helpful in preserving patient confidentiality (eg, avoiding the disclosure of patients’ sex in a small sample size to preserve anonymity).

Many other exciting changes are anticipated with the upcoming 11th edition. Stay tuned for more!—Heather Green

 

 

Medical Literature and “Forbidden Words”

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On December 15, 2017, reports emerged that staff at the Centers for Disease Control and Prevention (CDC) were presented with a list of 7 forbidden words or phrases (ie, diversity, transgender, vulnerable, fetus, entitlement, evidence-based, and science-based) when writing budget appropriation requests. Since then, officials from the Department of Health and Human Services clarified the situation, saying that these words should be avoided but were not necessarily prohibited. Regardless, physicians, researchers, marginalized people and their allies, and others have spoken out against this. What is the importance of these words in a medical research context, and what does the AMA Manual of Style say about usage?

Diversity

Including men and women of different races/ethnicities is imperative to research, particularly for understanding drug outcomes. For example, male and female bodies metabolize drugs at different rates. Because women wake faster from sedation with anesthetics, they recover at a slower rate and report more pain events than men. Not including both male and female participants in a study could lead to incomplete results. Race and ethnicity are also important to incorporate in medical research because specific diseases or disorders may be more pertinent in certain groups, such as chronic hepatitis B in Asians and Pacific Islanders or Tay-Sachs disease in the Ashkenazi Jewish population.

Transgender

Transgender refers to people whose gender identity differs from the sex they were assigned at birth. Transgender health care is unique and differs from cisgender health care. Besides gender reassignment surgery, transgender patients may also require special care concerning mental health or substance dependence.

Vulnerable

Clinically vulnerable populations may include persons with Medicaid, no health insurance, low educational attainment, limited English proficiency, and members of racial/ethnic minority groups.

Fetus

A fetus is the unborn offspring in the postembryonic period, after major structures have been outlined. Per AMA style, neonates or newborns are persons from birth to 1 month of age, and infants are children aged 1 month to 1 year. There is a clear difference between a fetus and a newborn or infant. Fetus is a medical term and is not open to political or social interpretation.

Entitlement

Government programs that give assistance to anyone who qualifies are called entitlements. For example, Medicaid, the Children’s Medical Security Plan, and the Vaccines for Children Program are entitlement programs. These types of programs are important for those who may not have easy access to health care.

Evidence-based and science-based

According to some reports, these phrases should be replaced with “CDC bases its recommendations on science in consideration with community standards and wishes.” Evidence-based medicine applies the best evidence from rigorous studies (eg, randomized clinical trials) to clinical decision making, and hopefully, to policies. Without evidence-based medicine, clinicians may not be using the best knowledge base when treating patients.

Even if these words are actually banned from use in CDC budget requests, it is important to note that medical journals with true editorial freedom would theoretically never fall into a similar situation. Editors and publishers/owners must guard against the influence of external commercial and political interests (as well as personal self-interest) on editorial decisions. Editors of such journals should not comply with external pressure from any party that may compromise their autonomy or of their journal’s integrity. The AMA Manual of Style notes these examples, among many others, of inappropriate pressure:

  • Pressure from an owner or a politically powerful or motivated individual or group on the editor to avoid publishing certain types of articles or to publish a specific article
  • Compliance with governmental or other external policy to not consider manuscripts from authors based on their nationality, ethnicity, race, political beliefs, or religion

Read more about editorial freedom and integrity of medical journals in AMA 5.10.—Iris Lo

Quiz Yourself

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A scientist develops data while working at Harvard University. She then moves to Stanford University, where she publishes an article using the original data in JAMA. Who owns the data?

a. Harvard University
b. Stanford University
c. Scientist
d. JAMA

Use your mouse to highlight the answer:   Harvard University

In scientific research, 3 primary arenas exist for ownership of data: the government, the commercial sector, and academic or private institutions or foundations. Although an infrequent occurrence, when data are developed by a scientist without a relationship to a government agency, a commercial entity, or an academic institution, the data are owned by that scientist. Any information produced by an office or employee of a government agency in the course of his or her employment is owned by the government. Data produced by employees in the commercial sector (eg, a pharmaceutical, device, or biotechnology company, health insurance company, or for-profit hospital or managed care organization) are most often governed by the legal relationship between the employee and the commercial employer, granting all rights of data ownership and control to the employer. According to guidelines established by Harvard University in 1988 and subsequently adopted by other US academic institutions, data developed by employees of academic institutions are owned by the institutions (§5.6.1, Ownership and Control of Data, pp 179-183 in print).—Laura King, ELS