Category Archives: Covering medical studies

“Many Tuskegees” occur daily in the U.S. 

Epidemiologist Dara Mendez, Ph.D., M.P.H., pediatrician Diane Rowley, M.D., epidemiologist Theresa Chapple-McGruder, Ph.D., and epidemiologist Bill Jenkins, Ph.D., who blew the whistle on the experiment at Tuskegee while working at the U.S. Public Health Service, gather at the 2017 meeting of the American Public Health Association. (Photo courtesy of Theresa Chapple)

When writing about the 50th anniversary of the revelation of the U.S. Public Health Service study at Tuskegee, I reached out to several Black health care professionals to ask for their perspectives on the study’s legacy a half-century later. Five women — an epidemiologist, two psychiatrists, a surgeon, and an HIV primary care physician — offered their insight. This post shares two of those perspectives, one focused on the man who blew the whistle on the experiment and the other on how the legacy of the experiment at Tuskegee is playing out with monkeypox.

Key takeaways

  • The whistleblower who ensured the world found out about the U.S. Public Health Service study at Tuskegee, Bill Jenkins, Ph.D., has also been a role model to Black epidemiologists in showing how to stand up to racism within the system.
  • Although the “Tuskegee study” is a convenient shorthand, it’s more appropriate and accurate to refer to the experiment as the ”U.S. Public Health Service study at Tuskegee” to keep the blame on the perpetrators rather than the victims.
  • The experiment at Tuskegee lives on in a collective memory of those in the Black community even when they don’t necessarily know the details of the specific study.
  • The distrust many in the Black community have toward the health care system is less about this one experiment than is “the everyday interactions” they have today, as “many Tuskegees” are occurring all the time.
  • The rollout of the monkeypox vaccine demonstrates how treatment is being denied to Black communities that need it.

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The Tuskegee Syphilis Study revelation’s legacy 50 years later

Photograph of participants in the Tuskegee Syphilis Study (Photo courtesy of National Archives)

It’s been 50 years ago last month since the nation learned about one of the most shameful and consequential chapters in U.S. medical research (and there’s a fair bit to pick from). In the “Tuskegee Study of Untreated Syphilis in the Negro Male,” the U.S. Public Health Service enrolled 600 Black male sharecroppers from Tuskegee, Alabama, and intentionally withheld information and treatment from approximately 200 of the 399 Black men who had syphilis while researchers studied how the disease affected their life course.

Key takeaways for journalists

  • An understanding of health care racial/ethnic disparities is essential for ethical reporting on health and medicine.
  • The Tuskegee Study is a consequence of U.S. institutional racism and false beliefs about Black men, and it’s one contributor to health care disparities among Black Americans today.
  • A basic familiarity with the facts of the Tuskegee Study is crucial for health reporters to know.
  • Part of the Tuskegee Study’s enduring legacy contributes to the mistrust and/or skepticism many Black Americans have regarding health care and medicine.
  • The Tuskegee Study alone is not the primary driver of Black mistrust in health care and should not be dismissively used as a scapegoat to explain a complex phenomenon informed by people’s personal experience, a long history of personal and structural racism in U S. health care, and the continuing systemic racism that exists in U.S. health care and medicine.

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More registered nurse staffing means fewer sepsis deaths

Photo via pexels.

Higher levels of registered nurse staffing are associated with a lower likelihood of Medicare patients’ dying from sepsis in hospitals, according to a recent study published in JAMA Health Forum. An estimated 1.7 million cases of sepsis occur each year, killing 270,000 annually. Even more concerning is one in three patients who die in the hospital has sepsis, according to the CDC. Not all of those deaths occur because of sepsis, but it’s a contributing factor in nearly all cases.

The vast majority of infections that cause sepsis, however — 87% of them — begin outside the hospital, according to the CDC. The difference between life and death depends on early identification of sepsis and immediate treatment. Registered nurses play a significant role in that process because they have more regular interaction with patients and more opportunities to observe symptoms of sepsis.

Why does this study matter to journalists?: Nurses continue to be an under-appreciated and under-utilized resource for better understanding health care issues. Here are some key takeaways from this study:

  • Nurses can play a crucial role in the prevention and treatment of a wide range of conditions.
  • Journalists need to include nurses in their source lists when reporting on diseases, hospital-acquired infections, and other conditions that have traditionally involved only quoting physicians.

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As racism rises, mental health of youth of color worsens

Photo by cottonbro via pexels.

Racism is a stressor for its victims, no matter their age, researchers began concluding several decades ago. Adding to that body of analysis are some new studies on specific impacts of racial discrimination and race-based hatred on Black and Asian young people. This research and related data can help journalists expand their coverage of how schools, clinicians and communities are tackling the fallout from racism.

Black youth living in areas deemed to have more anti-Black racism were less likely to benefit from cognitive-behavioral and other psychotherapies than their counterparts residing in communities where anti-Black racism is comparatively lower, according to a study analyzing five decades of psychotherapy research.

The study, published in June in the Journal of the American Academy of Child and Adolescent Psychiatry, involved people across 34 states and used “publicly available data on anti-Black racist attitudes to create a measure of state-level structural racism and analyzed randomized controlled trial data from youth psychotherapy studies of 2,182 mostly Black youth.” 

 “The extent to which racism or other prejudicial attitudes are endorsed in a given community — such as a neighborhood or a state — varies across the country,” lead researcher Maggi Price, a Boston University social work professor and director of its Affirm Lab, said in a press release. “Our study found that the level of racism in one’s community affects how well one does in mental health treatment.”  

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How to find reliable COVID-19 data

One of the most challenging aspects of reporting on the pandemic has been accessing reliable, accurate data about COVID-19 and its impact on Americans. The need for trustworthy, real-time data has caused a few journalism and nonprofit groups to create repositories to pull together data from varying sources.

A Thursday morning session at Health Journalism 2022 in Austin, “The quest for COVID-19 data: Where “official sources” fell short and journalism stepped in,” focused on these efforts and provided journalists with a wealth of resources for up-to-date data related to the pandemic.

Most high-income countries have national health care systems, so data collection and collation is far more straightforward than in the federalized U.S. health care system, where a mix of private and public payers are governed by national and differing state laws. Without a national registry or centralized healthcare system, it’s been harder to track statistics on COVID cases, hospitalizations, deaths, vaccinations, and other relevant numbers.

Hence the creation of Documenting COVID-19, a public-records repository with nearly 300 record sets and more than 100 investigative stories published with different partners since March 2020. The project team includes journalism fellows and Columbia University journalism and data science researchers funded through grants from MuckRock and Columbia’s Brown Institute for Media Innovation. The Documenting COVID-19 project pulls together internal emails, memoranda and health metrics from local and state governments, especially health departments, school districts and governor’s offices to create the repository.

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