MLA's Statement on Protecting Access to Health Information

In response to recent political actions, including threats of defunding, lost workforce, and disappearing data on federal websites, The Medical Library Association (MLA) issued a position statement:

Protecting Access to Health Information: The Critical Role of Libraries, NLM, and NIH Funding

Medical Library Association Position Statement - February 25, 2025.

We are encouraged -- both MLA members and non-members -- to contact our US Representatives and Senators to share or quote from the statement and let them know how the federal government’s recent actions are impacting our work. An emailed press release from a random organization will be ignored, whereas if the message comes from one of their constituents, an aide will at least read it (or hear it, if it’s a phone call).

We must remember we, their voters, are their boss, and they serve us, not the other way around. 

 

Upcoming WHSLA WISDOM Chat March 21: Will White on Systematic Review Tools and Instructional Design

Will White, Health Science Librarian at UW-Milwaukee

The upcoming WHSLA Wisdom Chat features Will White. 

Friday, March 21, 2025  from 2-3 pm CST

In this Wisdom Chat, Will White, Health Sciences Librarian at UW-Milwaukee, will inform us about what he learned about systematic review tools and instructional design, and how he has incorporated key takeaways into his work at UW-Milwaukee.

Will won a 2024 WHSLA Professional Development Grant.  This presentation will fullfill the grants requirement to share learnings with WHSLA Members via a Wisdom Chat or a blog post.

Join us for Will’s presentation followed by our usual round of sharing.

WHSLA Wisdom Chats are open to all WHSLA members in good standing. If you are a current member and did not receive an invitation, please contact Michele Matucheski, WHSLA Wisdom Chat coordinator filling in for Barb Ruggieri this year. 

What if We Can't Rely on PubMed?

This thought has certainly crossed my mind in the past few weeks -- every time PubMed goes down, even just briefly with a 403 (or some other error), my first thought is; "This is the end."   

So far, it's only ever been a brief outage, and it has come back online in 10 min. or so -- Thankfully!

I'm not the only one with these doomsday thoughts ...  

Hilda Bastian at the Absolutely Maybe PLOS Blog wrote an article entitled "What if we can't rely on PubMed?"  She offered some alternatives around the world that we can fall back on if necessary.  

Weathering the Storm with YLE

I have to admit: I am feeling more than a little out-of-sorts with the current political situation and what could happen to public health, medicine and medical research (among other things) in the next few years ...  Life as we know it will change.

One of the leaders / writers who gives me some hope is Dr. Katelyn Jetelina at Your Local Epidemiologist (YLE).  She started writing during the pandemic to help explain some of the science, statistics and public health proclamations as they were released -- Sort of "public health for the rest of us" in plain terms that was easy to understand.  Communication is her thing.

It seems absolutely bonkers that a vaccine denier would ever be in charge of the NIH and CDC.  Here is some advice from YLE about how to get through the coming storm for public health ...  I've pulled out some of the salient points, but please see her full article for more details about how we might weather the storm.

RFK Jr. is now HHS Secretary. What comes next?

What to look out for and tips to navigate the storm

• Half of Americans get their health information from social media.
• Social media rewards sensational content, not accuracy.
• Falsehoods spread 6x faster than the truth.
• Bad actors fuel this landscape for a profit, like through supplements or services.
• These messages are now coming from the highest health office in the country.

 Navigating through the storm:

1. Recognize top-down information doesn't work anymore.
2. Meet people where they are.
3. Tell more stories.
4. Recognize trust isn't declared -- it's demonstrated.
5. Don't turn your anger into shaming others.
6. Keep telling the truth.    

Library Legislative Day 2025

Interior of the Wisconsin state capital in Madison.

Posted on behalf of Liz Suelzer.

On Tuesday, February 11, 2025, I had the privilege of participating in Library Legislative Day,
organized by the Wisconsin Library Association. This was my first time attending such an event, and I wanted to share my experience to inform others who might have the opportunity to participate in similar events. I participated in this event because I’m a trustee on the West Allis Public Library Board and the Milwaukee County Federated Library System (MCFLS) Board.

I rode a bus to the capital with over 35 librarians, library directors and library friends from the
MCFLS and Bridges library systems. At the capital, there were over 200 attendees from all over the state, including a group of library students from UW Madison.

Governor Evers making the rounds at the opening meeting.

The day began with speeches from Governor Tony Evers, State Superintendent Jill Underly, and other state leaders. The speakers all shared how libraries have impacted their lives. Governor Evers reaffirmed 2025 as the “Year of the Kid” and spoke about how libraries are essential spaces for children and families to access information, computers, and programs. He also vowed to veto any law banning content from libraries, which received applause.

WLA organized the schedule of meetings for the day, and attendees were scheduled to meet
with legislatures from their district. WLA provided us with information packets to give to our
legislatures that included infographics and talking points about libraries. There were between 2-5 attendees at each 20-minute meeting. We took turns sharing stories about how our libraries impact our communities directly and the value of libraries. Our major ask to the legislatures was that the next budget have sustained or increased funding for public library systems in the next biannual budget. We heard that the budget process will be contentious, but it was great to see bipartisan support for public libraries.

Liz Suelzer and Representative Angelito Tenorio.

As a resident of West Allis and a board member of the West Allis Public Library, I was assigned to meet with Senator Rob Hutton and Representative Angelito Tenorio. I met with staff from Sen. Hutton’s office, and I got to meet with Representative Angelito Tenorio and his chief of staff. Rep. Tenorio served on the West Allis Public Library Board with me a few years ago and has a good understanding of libraries. I’m glad he’s representing my district in Madison.

If you come across opportunities like this, I encourage you to consider signing up. WLA
provided me with everything I needed to have a successful meeting with my legislators, and it
was a positive experience for me.

As the US government removes health websites and data, here’s a list of non-government data alternatives and archives

by Naseem S. Miller, The Journalist's Resource

February 3, 2025

This work is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License.

You are free to republish this piece both online and in print, and we encourage you to do so with the embed code provided below. We only ask that you follow a few basic guidelines.  

On Friday night, Dr. Gordon Schiff, the quality and safety director at the Harvard Medical School, received an email from a colleague informing him that one of his academic papers published on a federal website was taken down. It included the words “transgender” and "LGBTQ," which are among the words that are being removed quickly from federal websites following the Trump administration's orders to stop diversity initiatives, remove references to gender and equity from public health material and withdraw research papers that promote "gender ideology."

https://journalistsresource.org/home/researchers-rush-to-preserve-federal-health-databases-before-they-disappear-from-government-websites/

Schiff's paper, “Multiple Missed Opportunities for Suicide Risk Assessment” — available on the Wayback Machine — was published in 2022 on the Agency for Healthcare Research and Quality’s Patient Safety Network website. It was a case study with advice and commentary for physicians and it included this sentence: “High-risk groups include male sex, being young, veterans, Indigenous tribes, lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ).”

“We weren’t even advocating anything here,” says Schiff, who is also the associate director of Brigham and Women’s Center for Patient Safety Research and Practice. “We were just reporting what the risk factors were.”

Between Friday and Sunday, nearly 8,000 U.S. government websites were taken down, reported Ethan Singer of The New York Times. ABC News reported on Friday that the U.S. Department of Agriculture has directed its officials to remove content related to climate change from public websites. It’s unclear whether the web pages will come back online, and if so, to what extent they will be modified.

Schiff says he's aware of 19 other papers and summaries that were removed from AHRQ’s Patient Safety Network.

“A wholesale censoring of things that have already been published, a wholesale precluding of the kind of research where the problems are the greatest is chilling and it’s dangerous,” says Schiff, who began his medical residency in 1976 and has been at the Brigham since 2007. “People’s lives are going to be lost.”

Schiff encouraged journalists to continue holding public officials accountable.

“They need to be exposing abuses like this,” he says. “They need to be not afraid.”

While journalists continue to report stories about what's happening to federal health data, they also need access to data to report stories about health issues in general.

There’s no perfect alternative to the government databases, but some non-governmental organizations have their own datasets, which can be useful to journalists. Several journalism associations have also been downloading government data and making them available to their members.

To help journalists with their continued reporting, we have curated a list of non-government websites that have health data, although some use government data to create their reports.

We'll continue to update this list. If you have a suggestion for a database, please email us.

!function(e,n,i,s){var d="InfogramEmbeds";var o=e.getElementsByTagName(n)[0];if(window[d]&&window[d].initialized)window[d].process&&window[d].process();else if(!e.getElementById(i)){var r=e.createElement(n);r.async=1,r.id=i,r.src=s,o.parentNode.insertBefore(r,o)}}(document,"script","infogram-async","https://e.infogram.com/js/dist/embed-loader-min.js");

Alternative sources of health data

• ProPublica: The nonprofit investigative news organization has several helpful datasets, including the Nonprofit Explorer allows you to browse millions of annual tax returns filed by tax-exempt organizations, including nonprofit hospitals. Nursing Home Compare and Nursing Home Inspect, which provides the latest CMS data on nursing homes in an easy-to-download format. Its Nursing Home Inspect website is interactive and searchable by nursing home, state or county. And Dollars for Docs allows users to search for industry payments to doctors, made from August 2013 to December 2018.

• Association of Health Care Journalists’ Health Journalism Data: The page includes several databases including hospitalinspections.org, which lists federal hospital inspection reports; hospitalfinances.org, which allows you to find nonprofit hospitals’ finance reports; and State Insurance Guide, which is created by the Georgetown University’s Center on Health Insurance Reforms, and has information on how insurance works in each state.

• KFF (formerly the Kaiser Family Foundation): KFF is an independent source for health policy research, polling and news. It produces reports on a range of topics from COVID-19 to HIV/AIDS, Medicaid, Medicare, the Affordable Care Act and useful resources such as State Health Facts.

• State Medicaid Fact Sheets: Created by the nonprofit Commonwealth Fund, the Medicaid fact sheets include who and how many people are covered by state Medicaid and CHIP programs; Medicaid’s importance to health care in rural America; how many young people depend on Medicaid for access to behavioral health services; and how many federal Medicaid dollars each state receives.

• Congressional District Health Dashboard: Congressional District Health Dashboard provides measures of health and its drivers at the congressional district level, showing how each district is doing on health outcomes, social and economic factors and other measures. The Dashboard was created at the Department of Population Health at NYU Grossman School of Medicine with the support of the Robert Wood Johnson Foundation. The group also manages the City Health Dashboard.

• Health Care Cost Institute (HCCI): HCCI, an independent nonprofit research organization, provides data on health care spending, use and pricing from private health insurers. It is widely used to analyze trends in healthcare costs and access for commercially insured populations.

• PEW Research Center: Pew is a nonprofit, nonpartisan organization that conducts public opinion polls, demographic research, content analysis and other social science research. It does not take policy positions.

• The National Patient-Centered Clinical Research Network: Funded by PCORI, an independent, nonprofit research funding organization, PCORnet, is a national patient-centered clinical research network, providing a health data, research expertise and patient insights.

• Institute for Health Metrics and Evaluation (IHME): Based at the University of Washington, IHME is an independent health research organization, with collaborators around the world. It produces research on a range of topics, including air pollution, alcohol use, COVID-19, maternal health and vaccine coverage.

• County Health Rankings & Roadmaps: County Health Rankings & Roadmaps is a program of the University of Washington Population Health Institute. It produces annual data on the health of counties across the U.S., taking into account factors like premature death, low birthweight, adult smoking, obesity and sexually transmitted infections.

• Rural Hospital Data: Rural Hospital Data, part of the National Rural Health Association, provides state reports on the impact of federal policies on health care providers and patients. The data shows the annual revenue loss and potential job loss for each care provider based on each policy.

• The United Network for Organ Sharing (UNOS): UNOS is a nonprofit organization responsible for maintaining the national transplant waiting list, matching donors to recipients and overseeing organ allocation policies to ensure fairness and efficiency. The organization also provides educational resources for patients and professionals and conducts research.

• American College of Surgeons National Surgical Quality Improvement Program (ACS NSQIP): ACS NSQIP collects data on surgical outcomes from hospitals and surgical centers. It’s used to measure and improve the quality of surgical care, focusing on patient safety and reducing complications. The program also has a collection of quality improvement case studies.

• National Cancer Database (NCDB): The NCDB is a joint initiative of the American College of Surgeons and the American Cancer Society. It contains clinical and outcomes data from more than 1,500 accredited cancer programs, covering approximately 70% of newly diagnosed cancer cases in the U.S.

Data archiving efforts

• Harvard Dataverse: Harvard Dataverse is a large publicly-available repository of data from researchers at Harvard University and around the world, covering a range of topics from astronomy to engineering to health and medicine.
• The Harvard Library Innovation Lab Team has released more than 311,000 datasets harvested in 2024 and 2025 on Source Cooperative.

• Public Environmental Data Project: Run by a coalition of volunteers from several organizations, including Boston University and the Harvard Climate and Health CAFE Research Coordinating Center, the project has compiled a large list of federal databases and tools, including the CDC's Social Vulnerability Index and Environmental Justice Index.

• Investigative Reporters & Editors: The nonprofit journalism organization has downloaded more than 120 data sets from the federal websites, as recently as November. Some of those data sets include Adverse Event Reporting System, Behavioral Risk Factor Surveillance System, Medical Device Reports, Mortality Multiple Cause-of-Death Database, National Electronic Injury Surveillance System (NEISS), National Practitioner Databank, Nuclear Materials Events Database, OSHA Workplace Safety Data and Social Security Administration Death Master File. IRE members can contact the organization and order the data sets. The organization has been providing data to members since the early 1990s.

• Run by health policy data analyst Charles Gaba, ACASignups.net has a list of archived versions of cdc.gov web pages.

• Here are some of the CDC datasets uploaded to the Internet Archive before January 28th, 2025.

• Archive.org has an "End of Term 2024 Web Crawls" collection, from which you can download data.
• The 19th, an independent nonprofit newsroom reporting on gender, politics and policy, has preserved government documents, including the CDC's maternal mortality data, CDC's abortion and contraception data, research studies on teens and guidelines from the National Academies on how to collect data on gender and sexuality.

Additional resources

• Keep track and make use of health state health department data and websites.

• For health data from a neighboring country, check out Health Canada.

• This Substack is keeping track of CDC guidelines that have been removed.
• The Freedom of the Press Foundation listed several archiving resources in its February 9, 2025, newsletter.

• In this February 7, 2025, article published on Medscape Medical News, Liz Seegert has a list of CDC archives and datasets, including practice guidelines.

• In this February 5, 2025, article, published on the Association of Health Care Journalists' blog, science journalist Tara Haelle lists several resources that have been archiving federal infectious disease data, including immunize.org, which has archives of CDC's Vaccine Information Statements.

• In this January 14, 2025, article, published in The Open Notebook, freelance writer and assistant professor Alice Fleerackers lists several open-source databases to help journalists with their reporting.

• Johns Hopkins University has a collection of public health resources.

This article first appeared on The Journalist's Resource and is republished here under a Creative Commons license.

Pets of WHSLA: Bishop

Thank you to Michelle Harrell for sharing this blog post. 

Newly published editorial written by three WHSLA librarians: Charting Your Course: A Roadmap to Select a Review Type for Your Research Journey

Three WHSLA librarians, Jannette Bradley, Barbara E. Ruggeri, and Karen L. Hanus published an instructive editorial about which type of review is the most suitable when performing a literature review. Indeed, choosing the right review type is not always straightforward, and this editorial can assist authors in avoiding wrong turns on their research journey.  The authors summarized seven of the most prevalently-used review types and provided a purpose-driven roadmap of them.

•  Bradley J, Ruggeri BE, Hanus KL. Charting your course: a roadmap to select a review type for your research journey. J Patient Cent Res Rev. 2025;12:4-8. doi: 10.17294/2330-0698.2133

 

 

ACOG Addresses Removal of and Restores Access to CDC Data

This week, in response to CDC removing critical scientific research, ACOG President Stella Dantas, MD, FACOG, and ACOG CEO Sandra E. Brooks, MD, MBA, FACOG, released a statement calling for uncensored access to scientific research and clinical data. In the statement, they wrote that “removing or limiting access to data and information does not constitute good health policy or contribute to improved health outcomes.”

ACOG has also taken steps to ensure that access to these critical resources is restored for all health care professionals, scientists, and researchers. Along with other ACOG-endorsed guidance documents, the following resources are now available on the ACOG website:

• Recommended Adult Immunization Schedule for ages 19 years or older (2025)
• Recommended Child and Adolescent Immunization Schedule for ages 18 years or younger (2025)
• Sexually Transmitted Infections Treatment Guidelines, 2021
• U.S. Medical Eligibility Criteria for Contraceptive Use, 2024
• U.S. Selected Practice Recommendations for Contraceptive Use, 2024

 

UMN LibGuide on finding missing federal data

From Elizabeth (Liz) Weinfurter, MLIS

Nursing Liaison Librarian | Health Sciences Library| University of Minnesota

I'm sharing a fantastic new LibGuide our University of Minnesota GovPub Librarians put together a few days ago with a section on dealing with missing government data.

• The main guide is Finding Government Information during the 2025 Administration Transition.

• The data rescue subpage covers tools and strategies for a lot of the practical stuff our health sciences folks are running into.

Please use and share widely - we're in this together.

Updates from WHSLA President

 Hi WHSLA Members-

Welcome February- I hope you are doing well.  Here are some WHSLA updates:

Ad Hoc Committee activities:

Our ad hoc committee focused on Medical Librarian Career Outreach met in November. We prioritized having a web page and reaching out to the information science schools in the state to learn their needs and offer our assistance in providing information, mentorship and practicum experience for library science students to acquaint them with medical librarianship.

In January, Hayley Severson, adapted  MLA's "About the Profession" web page with permission. She  augmented the description to include more insights from WHSLA board members.  Liz Suelzer has now uploaded it to the WHSLA website.  https://www.whsla.org/about/about-the-profession/

 Also in January, Will White and I met with University of Wisconsin -Milwaukee School of Information Studies Assistant Dean - Student Affairs  Chad Zahrt and Julie Walker the school's  Student/Alumni  Engagement & Outreach Specialist.  They are now aware of WHSLA members desire to foster interest in medical librarianship.  Will White will be the contact for Julie Walker.  He will send her information on meetings, outreach activities and fieldwork from WHSLA.  Julie will reach out to Will when they need a speaker or panelist about the career. We are excited to establish more formal ties to the program so we can create interest in MLA 2026 in Milwaukee among library school students!

 New Membership Form:

In other news, for those of you who have trouble with Google Docs because of hospital firewalls, we have created a fillable pdf membership form so there is no need to print and scan your renewal form.

Professional Development Award Sign up Feb.6-28:

With the scheduling of MLA 2025 on  April 29 - May 2, I asked our Professional Development Coordinator Dora Davis to open up the drawing for the award a bit earlier, so members who might want to use the award can make plans before the early registration discounts end.  Thanks to Dora, you may enter Feb. 6 to  Feb. 28, 2025.  Watch an email with the link to the form on February 6, 2025.

Your At- Large Board Members:

Generally we have a spring board meeting in April.  If you have concerns or questions to bring before the board, a reminder that there are two at-large board members you may contact. Reach out to either Michelle Harrell or Will White.

Have a great month!

Barb Ruggeri

WHSLA 2025 President