Bias by exclusion: MedlinePlus & more

 

Last week Matthew Noe shared an update (alt text available on clickthrough) - 

Sharing this update provided to me directly about the state of NLM and the future of NNLM, traveling exhibits, and, somehow, MedlinePlus. I am so worried for friends and colleagues, and I'm stuck on that, but it is hard to not want to scream WTF about a MedlinePlus with no new material. #medlibs

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— Matthew Noe 🔜 #ALAAC25 (@noethematt.bsky.social) June 18, 2025 at 5:36 AM

There is much concern about these potential directions of the National Library of Medicine (NLM) and the Network of the National Library of Medicine (NNLM). Following up from last week's post, there's still no sign of FY25 funding for NNLM (source) which should have begun on May 1. It's heartening to see Outside groups organize to form unbiased, independent vaccine panel. 

Speaking of bias, I had been both using & recommending MedlinePlus.gov as a source of 'trusted health information for you' in plain language since I was an NNLM intern in 2007.

I don't anymore as MedlinePlus and other federal health information resources contain bias by exclusion for American Indians and Alaska Natives, Asian Americans, Black and African Americans, Latino and Hispanic Americans, LGBTQIA+, and Native Hawaiian and Pacific Islanders with the 2025 administration change. 

This is my federal health information resources teaching strategy that I've been using with students, researchers & faculty for when a website no longer works or now seems to have less inclusive information since Federal DEI websites go dark after Trump order and threat of 'consequences' 

1. Look at the current information (a MedlinePlus example, Population Groups).  
2. Look at the previous information using archive.org (Population Groups on January 14, 2025).
3. Who/what is included there now? 
4. Who/what was included there but is now excluded? 
5. Why is that? 

American Indians and Alaska Natives have been here since time immemorial - 

• American Indian and Alaska Native Health no longer exists as a MedlinePlus population group or health topic.
• American Indian and Alaska Native Health did exist as a MedlinePlus population group and health topic.

Why is that? There is no apparent reason, and -

• American Indian/Alaska Native Health still exists at the Office of Minority Health (OMH) under the U.S. Department of Health and Human Services (HHS).
• American Indian/Alaska Native Health at OMH was more inclusive and informative before the 2025 administration change. 

Why is that when at a glance they may look the same?

Look deeper; the first section is unchanged, strikethroughs were January 18, 2025 wording, + are current changes:

This profile offers an overview of the social, economic, and environmental factors that shape the health of the American Indian and Alaska Native (AI/AN) population in the United States. Considering the unique environments, cultures, histories, and circumstances of AI/AN populations is fundamental to improving their health outcomes and reducing longstanding disparities. These factors, known as social determinants of health (SDOH), affect various health, functioning, and quality-of-life outcomes and risks. Non-medical factors like poverty, limited access to healthcare, and lack of education are all examples of individual SDOH that contribute to health disparities. + Factors such as education, income, and health insurance coverage, which are examples of non-medical drivers to health, can affect various health, function, and quality-of-life outcomes and contribute to disparities in health outcomes.

Visit Healthy People 2030 to learn more about SDOH 

Why is that when social determinants of health (SDOH) at Healthy People 2030 from the Office of Disease Prevention and Health Promotion (ODPHP) under HHS still exists? Shouldn't SDOH be more prominent for American Indian and Alaska Native health given last week's study showing Official US records underestimate Native American deaths and life expectancy?

There is no apparent reason, but look deeper; racism has been removed as a current SDOH example and discrimination has been excluded from current SDOH literature summaries.  

Be intentional with your health information seeking. Question any lack of inclusivity within it. Racism and discrimination exist and have real impacts on health. Excluding diverse population groups and certain words from federal health information resources does not mean health equity has been achieved.   

I'm not stopping my efforts towards working for the health for all people and I encourage you to do the same.