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SofiiaF3
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Thanks for the question! Should have provided context. With new executive orders, entire databases are being deleted of open sourc public academic data. Efforts to retain access are kind of disparate and keeping track is hard, whilst datasets are too big for lone people to download and archive or host.

For example, here's a short excerpt of just some of the deletions since yesterday (started collating to keep track in the masterdoc, hoping to make a website/distribution etc):

 


PAPERS AND TOPICS DELETED or UNAVAILABLE: (as of 2/2/25) AND ALTERNATIVE SOURCES (IF AVAILABLE)

 

Broad topics:

 

 

TO SORT: Deletions and removals

  • INCLUSIVE PRACTICES FOR HELPING STUDENTS THRIVE
  • YOUTH RISK BEHAVIOUR SURVEILLANCE SYSTEM
  • PREVENTING CHRONIC DISEASE | SEXUAL RISK FACTORS
  • SEXUAL HEALTH RISK ADVISORY CONCERNS
  •  
  • Also down was AtlasPlus, an interactive tool that lets users analyze CDC data on HIV, STDs, TB and viral hepatitis, and the CDC’s Social Vulnerability Index, data that helps researchers and public policy leaders identify communities that are vulnerable to the effects of disasters and public health emergencies.
  • A page about food safety during pregnancy called “Safer Food Choices for Pregnant People” was also removed.
  • CDC with surveillance data on HIV, viral hepatitis, STDs and TB. Also gone missing: a page with basic information about HIV testing. The CDC's Social Vulnerability Index, a tool that assesses community resilience in the event of natural disaster was also taken down.
  • For the first time in 60 years, MMWR weekly morbidity and mortality report isn’t published
  • Vaccine info sheets
  • As of Friday afternoon, several CDC pages related to HIV were down, including the CDC’s HIV index page, testing page, datasets, national surveillance reports and causes pages.
  • Many of the CDC’s sites related to LGBTQ youth were also removed, including pages that mentioned LGBT children’s risk of suicide, those focused on creating safe schools for LGBTQ youth and a page focused on health disparities among LGBTQ youth.
  • The site for the Youth Risk Behavior Surveillance System — a long-running survey that tracks health behaviors among high school students in the United States — said “The page you’re looking for was not found.”
  • Several webpages from Centers for Disease Control and Prevention with references to LGBTQ+ health were no longer available. A page from the HHS Office for Civil Rights outlining the rights of LGBTQ+ people in health care settings was also gone as of Friday. The website of the National Institutes of Health's Office for Sexual & Gender Minority Research Office disappeared.
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by SofiiaF
1 min readNo answers 4

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BiosecurityGlobal health & developmentOpportunities to take actionPandemic preparedness
Frontpage

Looking for anyone with an IT/maths/computing background to help make a simple database to keep a global track of removed/deleted sources and papers, provide alternatives to life saving information such as HIV drug regimens for active treatment, and to raise awareness of the concrete impacts associated with recent changes.

Hoping to keep it kind, civil and informative with a focus on facts and resource sharing. 

Also open to help from: moderators, community norm setters, people to post links, archivists, catalogouers, data acquisition professionals, biosec ppl, global health and public health researchers etc. Can be as little or as much as you want.

 

I am starting a campaign to try to improve current access to critical information.

 

Here's the campaign I'm starting with just a google doc, but hoping to grow it #HEALTHCAREWESHARE

A community drive to provide information in public and global health, biosafety, disease, medical care and more. To bridge the information gap and spread awareness of impacts, losses and alternative sources.

Please comment on the masterdoc to add a removed source or alternative. Or repost/comment if you:

•    Find a deleted or removed source you need

•    Had a funding/lab/paper cut or recinded due to new policies

•    Have public data that can’t be externally shared from the federal organisations but is allowed to be circulated, such as food recalls, drug interactions, or outbreak data

 

Let’s work together to create a (apolitical and informative) source for any scientist, healthcare professional, patient, researcher, epidemiologist, NGO and more to replace sources that are being removed to bridge the information gaps in critical health, medical and disease safeguarding.

https://docs.google.com/document/d/1Si4-mazN4YUJ1f0bczhNX7ic2dG1Hvps/edit?usp=sharing&ouid=103838672950603574456&rtpof=true&sd=true

https://linktr.ee/sofiiaf

I don't check dms very often so please email sofiiafurman.reachout@gmail.com

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Sanjay3
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Can you give an indication of how common the problem is? (ie how often do papers get lost/deleted?) My intuition says not very often, and when it does happen it's most likely to be the least useful papers, but I could believe my intuition is wrong.

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SofiiaF3
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Thanks for the question! Should have provided context. With new executive orders, entire databases are being deleted of open sourc public academic data. Efforts to retain access are kind of disparate and keeping track is hard, whilst datasets are too big for lone people to download and archive or host.

For example, here's a short excerpt of just some of the deletions since yesterday (started collating to keep track in the masterdoc, hoping to make a website/distribution etc):

 


PAPERS AND TOPICS DELETED or UNAVAILABLE: (as of 2/2/25) AND ALTERNATIVE SOURCES (IF AVAILABLE)

 

Broad topics:

 

 

TO SORT: Deletions and removals

  • INCLUSIVE PRACTICES FOR HELPING STUDENTS THRIVE
  • YOUTH RISK BEHAVIOUR SURVEILLANCE SYSTEM
  • PREVENTING CHRONIC DISEASE | SEXUAL RISK FACTORS
  • SEXUAL HEALTH RISK ADVISORY CONCERNS
  •  
  • Also down was AtlasPlus, an interactive tool that lets users analyze CDC data on HIV, STDs, TB and viral hepatitis, and the CDC’s Social Vulnerability Index, data that helps researchers and public policy leaders identify communities that are vulnerable to the effects of disasters and public health emergencies.
  • A page about food safety during pregnancy called “Safer Food Choices for Pregnant People” was also removed.
  • CDC with surveillance data on HIV, viral hepatitis, STDs and TB. Also gone missing: a page with basic information about HIV testing. The CDC's Social Vulnerability Index, a tool that assesses community resilience in the event of natural disaster was also taken down.
  • For the first time in 60 years, MMWR weekly morbidity and mortality report isn’t published
  • Vaccine info sheets
  • As of Friday afternoon, several CDC pages related to HIV were down, including the CDC’s HIV index page, testing page, datasets, national surveillance reports and causes pages.
  • Many of the CDC’s sites related to LGBTQ youth were also removed, including pages that mentioned LGBT children’s risk of suicide, those focused on creating safe schools for LGBTQ youth and a page focused on health disparities among LGBTQ youth.
  • The site for the Youth Risk Behavior Surveillance System — a long-running survey that tracks health behaviors among high school students in the United States — said “The page you’re looking for was not found.”
  • Several webpages from Centers for Disease Control and Prevention with references to LGBTQ+ health were no longer available. A page from the HHS Office for Civil Rights outlining the rights of LGBTQ+ people in health care settings was also gone as of Friday. The website of the National Institutes of Health's Office for Sexual & Gender Minority Research Office disappeared.
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Pat Myron 🔸1
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Checked the 8 links in the first section and they've all been archived on the publicly accessible Internet Archive for at least half a year. There's also browser tooling to access those archives quicker

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SofiiaF1
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Thank you so much for being proactive! It's true partial archives of some CDC datasets have been done, but the issue is is it's usually dynamic, in the sense that guidelines get republished each week (or day for outbreaks) and get updated continually. Furthermore, IA is working on archiving datasets, but downloading or using them only brings the static dataset without necessarily capturing the actual sitemap schema for navigation. Plus IA and EOT are great but are begging people to help out to decentralised our dependandance and provide alternatives if they get targeted. 

At the very least, the hope is the most critical day to day functioning information can be reported and provided.

For example, HIV prescribing guidelines for clinicians and NGOs valid since last week have been put onto the doc, and vaccine information sheets valid from 28 Jan 2025 also put onto the doc if anyone needs them.

 

But thank you for looking into it 💕

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