The turning point for rare diseases, which affect >300 million people around the world.
A call to get rid of its many structural obstacles, to consider it as molecular surgery unlike drug treatments
gift link:
www.nytimes.com/2026/04/09/o...
🌎 Ongoing work to get Project PIVOT questions tested and ready for use in patient experience surveys and research.
🌎 Fall advocacy in Washington, DC, focusing on diagnostic safety and patient reporting — PFPS US Champions will be needed to make visits to Congressional leaders and their staff.
🌎 CMS (Centers for Medicare and Medicaid Services) is expected to propose new safety and quality measures within the next two weeks, including new sepsis prevention best practices. Champions can serve as an important public voice in encouraging CMS to adopt measures like this.
🌎 April 23rd at 1 PM ET — Webinar to provide patient and family feedback to Mayo Clinic on its new “HealthLocator” hospital quality and safety rating system. You can register here to participate.
🌎 The Guardians of the Patient Safety Structural Measure (PSSM) — this PFPS US working group is developing video stories to inspire hospitals to adopt 25 patient safety best practices. Check out these prototype stories on YouTube.
PFPS US also would like the ability to call on you to contribute the patient voice to opportunities like these as they come up:
to advance patient safety, such as contributing to public comments on government rules and programs, participating in research-related and measurement activities, engaging with healthcare leaders and policymakers, and serving on working groups, advisory boards, or expert panels.
As Patients for Patient Safety US (PFPS US) approaches its 5th anniversary this June, we invite everyone to become engaged as a PFPS US Patient Safety Champion. There is no cost or any specific time commitment. PFPS US Champions have the opportunity to become more involved in a range of activities
Reimagining healthcare regulation to enable improvement, learning, and safety - an article via @bmj.com featured on the hub.
Want to make a difference in patient safety? Healthcare is changing fast with AI and industry changes, and there's never been a better time to join us as a PFPS US champion to help us work toward our goal for diagnostic excellence and safe care for all. Learn more here! www.pfps.us/become-a-cha...
Cøvid is remarkably adept at finding whatever was hurting you prior... And pressing on that bruise
👇🏻👇🏻👇🏻
www.nature.com/articles/s41...
#YouthMentalHealth is a growing concern, and digital tools are increasingly part of the conversation.
Our recent workshop highlighted opportunities, challenges, and the need for evidence-based approaches.
Explore what we learned: https://ow.ly/Kb7o50YGxpX
Clinicians who engage with creative empathy practices often report:
❤️ Better communication & listening skills
❤️ Greater sense of purpose & fulfilment
❤️ Reduced feelings of isolation & burnout
❤️ More empathetic patient care
🔗 Learn about our workshops: le.ac.uk/empathy/study
Webinar: A Conversation on Bioethical Responsibilities in 21st Century Crises. Tuesday, April 14, 7:00 - 8:15 PM EDT. Panelists include our Travis Rieder. Link for free registration to join via Zoom. us06web.zoom.us/webinar/regi...
Patient Advocacy in Action: Talking to Your Legislators #CareTalk live Mollie Montague @acscan.bsky.social explores w/ me @healthcarevoices.org @mswmedia.com
& @louisenorris.bsky.social @healthinsuranceorg.bsky.social Diane-Just Care answer your health insurance q’s
“Closure is the worst-case scenario, but it also doesn’t preclude hospitals from having to make really tough decisions about cutting services that might be essential to those communities but are just no longer financially viable,” O’Grady said.
www.nbcnews.com/health/healt...
The Shingles vaccine is linked w/ reduced risk of Alzheimer's in 4 large natural experiments
Today, the potential of high-dose flu vaccines vs standard dose in a large retrospective age 65+ cohort for less Alzheimer’s. More pronounced in women (like Shingles vaccines)
neurology.org/doi/pdf/10.1...
The incidence of cardiovascular disease in people with #LongCovid is elevated, as seen in a prospective study of >1.2 million individuals in Sweden, specifically coronary artery disease, arrhythmias, and heart failure
www.thelancet.com/journals/ecl...
Stakeholders offer some insights around the challenges and potential solutions including a federal investment in the field. #IDsky
www.contagionlive.com/view/as-infe...
Never in my life did I think I would get profiled in @thelancet.com, but here it is! I’m so grateful to Aarathi Prasad and Janna Palmer for recognizing the value of the work I do, especially as that work is being attacked from all sides. I will keep fighting for as long as I can!
📰 NEWS: Researchers – including members of our team - have carried out a systematic review which has concluded enhanced healthcare practitioner #communicationskills are associated with better patient adherence to treatment.
🔗 Read more: link.springer.com/article/10.1...
Scientists have developed a new highly accurate blood test that can detect endometriosis across menstrual cycle phases, catching cases missed by ultrasound and MRI.
Learn more: www.emjreviews.com/reproductive...
Photo of Rosie Bartel, sitting in a wheelchair, holding the award, with the people from CMS who gave her the award.
Congrats to one of our patient safety champions, Rosie Bartel, for being recognized for her work by CMS with the Jean-Moody Patient Safety Advocacy Award! www.pfps.us
Exploring the Patient’s Lifeworld-A Qualitative Study of Personalizing Language in Electronic Health Records. Akanksha Suresh, Priyanka Fernandes, Ayah Zirikly, Elaine Thompson, Anne Links, Keith Harrigian, Brant Chee, Mark Dredze, Mary Catherine Beach, Somnath Saha link.springer.com/article/10.1...
Relying on AI for certain aspects of diagnosis could help free doctors to focus on those more human parts of the job.
AI can recognize obscure patterns across millions of cases and publications, and surface possibilities that may lie outside any single physician’s experience. An LLM can recite treatment options and survival rates, but it cannot share responsibility for the choices that follow.
AI could also prove valuable in identifying conditions that a physician may never encounter in their career, or in helping diagnose patients that have stumped multiple clinicians. These cases tend to hinge on how encyclopedic a doctor’s knowledge of the medical literature is;
A doctor does this through medical education and personal experience; AI does it by predicting plausible explanations based on statistical patterns it has learned from its training materials.
