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, 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 when a website no longer works or now seems to include 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 been here since time immemorial - 

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

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. 

Resist: 5 months back after 5 years away

*gently blows 9+ years of digital dust off blogging*

Today marks 5 months since my return to the health information field as a public health librarian after a bit over 5 years away as a continuing education coordinator for public health workforce development and training. 

You know things are bad since I'm blogging again, although they were & are not bad with either of my jobs since 2019. It's very clear to me I've been called to help in both for the past 6 years of unprecedented times. Now it's also time to move from shock to storytelling to start documenting them.

On November 15 last year I had a horrible and quite visceral gut feeling about the direction we were headed in. Sure enough it's manifested into reality, just a few examples from last week include RFK Jr. sent Congress 'medical disinformation' to defend COVID change and having to honestly ask Can you still trust the US government’s vaccine recommendations?  

I stand in solidarity with National Institutes of Health (NIH) staff and last week's Bethesda Declaration and may have accidentally signed it twice. Please take the time to read the gut-wrenching Shattered Science: The Research Lost as Trump Targets NIH Funding. 

As of today the entire NIH-grant funded Network of the National Library of Medicine (NNLM) hasn't received FY25 funding (source), which should have begun on May 1. I'm thankful for the Alt NNLM YouTube channel and will watch for more alt resources - especially equity resources like the Diversity, Equity and Inclusion guide.  

The health information field is fortunate to have Hilda Bastian asking hard questions like What if We Can't Rely on PubMed? early (February 14). It was thanks to her thoughtful coverage last month of Germany's Plan for an Open and Independent PubMed Safety Net that I went to their English webinar last week, and encourage checking out ZB MED's Open Life Science Publication (OLSPub) database project information.   

I still have hope for both NNLM and my previous job's Public Health Training Center Network, which is Health Resources & Services Administration (HRSA)-grant funded, as their FY25 begins July 1. I have to hope. The consequences of losing these colleagues and the vast amount of work they've done for decades creating resources to support continuing education in their respective fields is unfathomable to me.