[00:00:00] Introduction: The Challenge of Disappearing Public Health Data
[00:00:00] Speaker: Imagine this. You're a CME professional working on an educational activity that depends on the latest public health data, but suddenly the data you've relied on, information about health disparities, epidemiological trends and evidence based interventions, is no longer available. Federal websites are blocked, reports have disappeared, and you're left wondering, how do I ensure my content remains accurate and relevant?
[00:00:29] Speaker: Our ability to create effective CME depends on access to accurate evidence based data, right? But what do we do when public health data is removed, altered, or restricted?
[00:00:41] Speaker: If you're facing this challenge as a result of the Trump administration's executive orders in February 2025? You're absolutely not alone. So today we're problem solving. What happens when key sources of evidence disappear? What can we do? We'll explore how to navigate these data restrictions, find reliable alternative sources, and maintain the integrity of your CME content.
[00:01:07] Speaker: I'm your host, Alex Howson and this is Write Medicine, the podcast where we explore best practices in creating high quality continuing education for health professionals.
[00:01:20] Impact of Data Removal on Public Health
[00:01:20] Speaker: The first weeks of the Trump administration in 2025 have seen public health data disappear from government websites, particularly in areas related to gender, health disparities, and social determinants of health. According to the Guardian newspaper and other sources, key public health resources on the Centers for Disease Control and National Institutes of Health websites have been disappearing and reappearing with altered or missing information.
[00:01:48] Speaker: Between Friday January the 31st and Tuesday, February the 4th, essential CDC pages for tracking and preventing HIV, managing sexually transmitted infections and prescribing contraception have intermittently vanished. A guide on gender affirming care for young people, once hosted by the Office of the Assistant Secretary for Health, was also removed.
[00:02:11] Speaker: At the NIH, the Office of Research on Women's Health has been stripped of critical content, including funding opportunities and maternal health data. Meanwhile, decades of data from the CDC's Youth Risk Behavior Survey and the Social Vulnerability Index remain unavailable. limiting access to vital insights on youth health and disaster preparedness.
[00:02:34] Speaker: And of course, U. S. federal websites have scrubbed references to LGBTQ health and information on certain vaccines. The President has issued executive orders that ban diversity, equity, inclusion in government agencies, as well as one that recognizes only two sexes, male and female, with no reference to gender.
[00:02:56] Speaker: And many CDC webpages display error [00:03:00] messages. And if all that wasn't bad enough, according to Medpage Today, CDC researchers have been ordered to retract papers submitted to all journals and scrub banned terms from CDC authored manuscripts. They are being asked to retract or pause the publication of any research manuscript being considered by a medical or scientific journal to ensure that so called forbidden or banned terms don't appear in the work.
[00:03:27] Speaker: Banned terms like gender. Transgender. Pregnant person. Pregnant people. LGBT. Transsexual. Non binary. Assigned male at birth. Assigned female at birth. Biologically male. Biologically female. This isn't the first time the CDC has had to respond to a list of banned words. It did so in 2017. When the first Trump administration issued a list of forbidden words like transgender, fetus, diversity, in 2017 major national health organizations issued strong statements in the defense of clear language to accurately communicate science and medicine.
[00:04:11] Speaker: As well as objectivity and diligent research in pursuit of accurate and unbiased reporting organizations like the American Medical Writers Association, which noted that medical communication is best served by the use of precisely defined terms that exist within the established literature and that are used the vast majority of scientists.
[00:04:36] Speaker: But this time round feels like a deeper level of assault that for us as CME professionals presents a substantial challenge. After all, we rely on data from organizations like the CDC and the NIH and many other government organizations or agencies to inform educational programs that help health care providers improve patient outcomes.
[00:04:59] Speaker: But when these sources become unreliable or inaccessible, Our ability to provide evidence based education is very much at risk.
[00:05:06] Speaker: So what does this mean for us in CME? How do we ensure that our content remains scientifically sound and reflects real world clinical practice needs? Here's the good ish news.
[00:05:19] Speaker: While losing access to key data sources is definitely a challenge, it's not completely insurmountable.
[00:05:25] At least in the short term.
[00:05:28] Speaker: But we do need to be proactive in seeking and cross checking alternative sources of evidence. So let's walk through some of the things that we can do as stopgap measures.
[00:05:40]
[00:05:40] Alternative Data Sources for CME Professionals
[00:05:40] Speaker: The first stop for epidemiological data and public health research is global health agencies and organizations like the World Health Organization, the European Center for Disease Prevention and Control, and the Pan-American Health Organization.
[00:05:56] Speaker: These all provide global data that often includes [00:06:00] us data. And also, if you work mainly in oncology, you'll be able to access 2024 data via the American Cancer Society reports. The second thing we can do. Since many federal health databases, aggregate state level reports, state and county health departments can be a gold mine for epidemiological and health disparity trends.
[00:06:25] Speaker: So that might also be something that we can look into. Yes, it takes longer and it's a bit trickier to find, but it's the source data for a lot of federal data.
[00:06:36] Speaker: A third source is academic institutions and research foundations. So university centres like the Harvard T. H. Chan School of Public Health and the University of Washington's Institute for Health Metrics and Evaluation maintain their own data repositories and independent analyses that you can use as source material in your CME development.
[00:06:59] Speaker: The National Library of Medicine has a great resource on where to find different types of health data like registry data or information from the grey literature. And I've included links to all of these things in a spreadsheet that I've put together mapping out these different sources and I'll put a link to this spreadsheet in this week's newsletter.
[00:07:21] Speaker: And if you're not a newsletter subscriber, now is the time to subscribe.
[00:07:26] Speaker: While research foundations like the Kaiser Family Foundation or the Commonwealth Fund also depend on CDC and other government data, they also have a wealth of analyses on U. S. health policy, Medicare and Medicaid, and health disparities that we can tap into as a kind of workaround. The Commonwealth Fund also offers independent research on health care systems and policies, often using independently collected data.
[00:07:55] Speaker: A fourth option is specialty medical societies and organizations Diseases Society of America, the American Public Health Association and the American College of Physicians publish reports based on member surveys and conduct independent research and guidelines But we can also use to support evidence based CME at this time.
[00:08:19] Speaker: We can use open sourced and archived data. A major project that is underway in response to these executive orders is the Internet Archive's Wayback Machine. and MedRxiv. These websites store past data and pre print research that we can use to fill in some gaps as well.
[00:08:42] Speaker: Another option includes think tanks that provide independent research and analysis on reproductive health, sexual health and policy. You'll find this at the Guttmacher Institute, or reports on public health trends and interventions, like those developed by the RAND [00:09:00] Corporation, and reports on health disparities, gender based health issues and government policies
[00:09:06] Speaker: provided by Human Rights Watch. By combining these sources in the meantime, we can continue to build educational programs grounded in reliable evidence.
[00:09:18] Speaker: But these workarounds and alternative data sources also create a little extra work for us. So let's talk about actionable steps you can take as a CME professional to adapt in this evolving landscape.
[00:09:33] Actionable Steps for CME Professionals
[00:09:33] Speaker: First of all, don't wait for data to disappear. Store any important datasets that you have access to, reports, guidelines that you routinely consult in your own reference library.
[00:09:45] Speaker: Use EndNote or some other reference system for easy search and retrieval. Second, when you're using alternative sources, cross check multiple references to ensure That you're being consistent and accurate. Is it more work? Yes, I think it is. But I think it's where we are right now.
[00:10:04] Speaker: Third, engage with your community. Collaborate with your CME peers, writers, researchers, subject matter experts to share insights and strategies for navigating the data challenges we're seeing right now. And fourth, stay informed on policy changes, keep track of shifts in health policy that might affect your access to data by following professional associations and health policy news outlets like ProPublica, Stat News, Health Affairs, which often investigate and report on changes in public health data and policies.
[00:10:40] Speaker: I've put together a living spreadsheet that I'd love for you to add to and share with your colleagues. The link is in today's newsletter, which I'll link to in the show notes.
[00:10:52] Conclusion and Call to Action
[00:10:52] Speaker: The landscape of the availability of public health data is shifting. So far, major healthcare and professional organizations haven't much responded to these executive orders and actions. I hope they will. I hope the ACCME and the Alliance for Continuing Education in the Health Professions will also develop a trenchant response to defend the established language we use to educate health professionals about standards of care and optimal, humane clinical practice.
[00:11:23] Speaker: In the meantime, by diversifying our sources, staying informed and collaborating with each other, we can continue to develop high quality, evidence based education for healthcare providers. I'd love to hear from you. What challenges are you facing right now in accessing reliable data for CME, and how are you working around them?
[00:11:45] Speaker: Share your thoughts by connecting with me on LinkedIn. Send me an email or a voice note. There's a link on the podcast web page and make your contributions to our living spreadsheet. [00:12:00] And if you found today's episode valuable, please subscribe to Write Medicine, leave a review and share with someone else in your circle who might benefit from listening.
[00:12:11] Speaker: Thanks for tuning in. Until next time, keep doing what you do and keep pushing the boundaries of continuing education for health professionals.
