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

[image or embed]

— 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 (6/30 edit to add: I published this blog entry at 6 am Pacific time June 23; I note FY25 NNLM NOA (Notice of Award) dated June 23 have been posted for many but not all NNLM). 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. 

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.

Soaring onward

2009-2016 was a good run, archived & mostly navigable of http://eagledawg.net, my new home at that time

If you're already subscribed via RSS nothing should change for your feedreader after I transfer it Tuesday morning to the new domain. I'm not 100% sure if that's the case for email though.

I look forward to continuing the journey with you there!

Reflection
My first post on March 22, 2008 was entitled A New Flight. This was after I had graduated from the University of North Texas with a Master of Science in Information Science, but I was still employed in payroll & human resources and not a Real Librarian yet.

Let's see some of what I had to say:

I still don't think of myself as a 'real' blogger because, for the time being, I don't have practical deep and profound brain things inside my head about the medical library profession since I'm not actually in it yet. I'm full of theory as any new graduate who is considered young by our profession's standards should be, but old enough to keep quiet and observe for now without expounding in public.

I didn't do a very good job about that keeping quiet part or expounding in public part for very long did I?

I'll likely continue to not do a good job at that and, quite honestly, I still don't think of myself as a 'real' blogger. I like investigating things and talking about them, and there's still so much to explore in the new year and decade ahead. Onward!

Friday Foolery #64: Confidential to UW Health Sciences

Merry Christmas from my bubble-wrapped antique glass fish ornament.

PubMed Alert

Edit from about another hour ago:

The problem with PubMed searching is resolved. The database is current as of yesterday 12/16/2009; it will be updated as soon as possible.

**** PUBMED-ALERTS NOTICE ****

In my inbox about an hour ago, no sign of any RSS alerts in feed reader yet

The use of PubMed occasionally results in unexpected error messages. For example: when you search for a known pmid, you may get the message "Wrong UID 20011576". While we work to resolve this, you may not be able to use PubMed for some searching.

**** PUBMED-ALERTS NOTICE ****

You are receiving this message as a subscribed member of PUBMED-ALERTS, an announcement service available from the U.S. National Library of Medicine (NLM).

Do not reply to this message. To contact NLM, write to NLM Customer Service at custserv@nlm.nih.gov or click "Write to the Help Desk" on any PubMed screen.

For LISTSERV commands and Frequently Asked Questions, see http://www.nlm.nih.gov/listserv/resources_assistance.html

Clinical Reader: Ooops! but not forgotten

This is my intended final post of substance (maybe this week's Friday Foolery, we'll see) over here.

Do Not Panic.*

As this year and Blogger gig comes to a close there may be another ending to report as well. If you're not already familiar with the Clinical Reader saga you can see the bottom of the original post or this summary: I blogged to call out false endorsements and images weirdness, they threatened to sue me on Twitter unless I took down my post, all sorts of weirdness occurred, and librarians are a pack of rabid wolves.

Here's what things looked like on November 28, 2009 according to Google:



Since then, there's been this:


Some subpages are still publicly accessible but dropping off the Google radar like flies, which still holds 'clinical reader twitter' steady as a suggested search term and has since at least September.



Speaking of Clinical Reader Twitter, another related Twitter account has been deleted (@allan_marks) though the highly inactive @Clinical_Reader still references it as a last tweet:



What's the scoop?

I don't know.

According to a comment supposedly made by Clinical Reader staff over at David Rothman's post last month about their unauthorized use of a New England Journal of Medicine video, "We’re currently in the process of being taken over by a large publisher who intends to integrate our technology into their own systems."

If anyone sees the publisher press release about that or the latest Clinical Reader Twitter account/website incarnation, do let me know.

Even if this strange story is now over and done, it showed us how ephemeral and difficult it is to efficiently reference and archive social media discourse. This will live on as a case study submitted by Marcus Banks as part of his chapter for a grey literature book that will be published in early 2010. I agree with Marcus' point that

it [Twitter, Facebook, etc.] is also not meaningless, from both an evidentiary and anthropological standpoint. This is how many people are communicating today.

QuoteURL was of great assistance in capturing deleted tweets in June yet it is already broken, TwapperKeeper and related services are helping to archive hashtags today, but what will be the WayBackMachine of social media discourse tomorrow?


*Very soon you'll see what's in store thanks to the awesome (thanks Cynthia!) fabulous (thanks Joelle!) hard work (thanks Mel!) of, as my beloved husband put it, winning the Boobiethon. I can hardly wait to share it all with you!

Friday Foolery #63: Ring it

As the bell brought in midwinter
I waited for a sign
A shadow of a wing
This has always been


The children know this,
That she will come to them
To them, to them

Snow angel, snow angel, snow angel
She'll make her way and she'll stay
For a time, for a time

-Snow Angel, Tori Amos (help yourself, it's free from Amazon)

I had not seen nor heard the bells in the top picture for nearly, if not exactly, 20 years until last night. There are now conflicting stories between my mom & her sister (the one who sent them to me) as to their whereabouts during that time I won't get into. 'Tis the season for family drama!

I, my mom & her sisters, and my grandpa all grew up with them being rung for Christmas. The original owner was my great-grandmother, born in Thorold Ontario (Canadian, eh? Surprise!) in the 1870s. The story is she was the only girl in town to have her own horse & sleigh, which probably used up all the 'I want a pony!' karma in the family because none of us have had horses since.

I went poking around and realized these are properly called shaft chimes since they each have 3 clappers and are attached to the poles of the sleigh like this lady had. We all grew up calling them sleigh bells but it's not like we central Californians ever went riding around in a sleigh to know any better. We'll work on a video to share later because they sound absolutely nothing like jingle bells, more like handbells on crack that immediately get your attention.

The International Harvester toy truck our son is playing with in the second picture also belonged to my grandpa as a boy and is another steadfast family Christmas tradition. I have no idea what the light was doing that night because the little antique Stieff teddy bear driver is not holy.