Patients For Patient Safety US

06/02/2026

Excited to speak at Stanford’s RAISE Health Symposium to discuss when AI becomes the first stop for patient health information and guidance. I’m looking forward to this important and timely conversation. Hope you can join us: https://stan.md/raisehealth

05/21/2026

"Doctors who dismiss symptoms of autoimmune diseases as psychiatric or psychosomatic can cause lasting harm, a University of Cambridge study has warned...More than 80% of patients reported that having their symptoms dismissed as psychiatric or psychosomatic, along with comments like "it's in your head," harmed their self-worth. For 72%, the experience remained upsetting even decades later....Patients who experienced misdiagnoses were more likely to experience higher levels of depression and anxiety and lower levels of mental wellbeing. They were also more likely to report lower satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid seeking healthcare." Read more here: https://www.medscape.com/viewarticle/autoimmune-disease-misdiagnoses-can-cause-long-term-harm-2025a10005ln?ecd=wnl_edit_tpal_etid7278727&uac=457076FX&impID=7278727

05/18/2026

Things are happening in patient safety, and we need your help to make a difference! Please join PFPS US on May 20, from 1:00 – 2:00 PM ET for a webinar exploring opportunities to become engaged, on these topics, especially:

🌎 The CMS 2027 Proposed Rule for Medicare Quality Reporting – This is the annual opportunity for patient safety advocates to speak up about CMS patient safety measures next year. On the docket is a new venous thrombolysis measure and a modification of the Maternal Morbidity Hospital Measure. Public comments are due by June 9, 2026.

🌎 Improving Diagnosis in Medicine Act – We expect a federal bill to support research on diagnostic safety to be introduced soon, and are planning Capitol Hill visits in September.

🌎 Patient Safety Structural Measure and Age-Friendly Hospital Measure -- Hospitals are reporting on these measures for the first time now. PFPS US is seeking stories that will inspire authentic implementation.

🌎 Project PIVOT – Building on this project to develop patient-prioritized patient experience and outcomes measures, PFPS US is planning to launch a new phase focused on diagnostic safety in Washington in September.

Register to attend here: https://us02web.zoom.us/meeting/register/HfEQ4fgTQYOkQrSDC164Rw #/registration

Welcome! You are invited to join a meeting: PFPS US Webinar. After registering, you will receive a confirmation email about joining the meeting.

05/08/2026

"In her new book, The Elusive Body: Patients, Doctors, and the Diagnosis Crisis, Alexandra Sifferlin addresses 'multiple kinds of diagnostic error—both incorrect and delayed.' These types of errors are surprisingly common.

An estimated 5 percent of Americans—about 13 million people—experience a diagnostic error each year. A 2023 study concluded that more than three-quarters of a million Americans are permanently disabled or die each year as the result of a misdiagnosis.

In 2015, a landmark report from the National Academies of Science, Engineering, and Medicine found that most people will be incorrectly diagnosed at least once in their lifetime.
The Elusive Body shows, is not just an occasional glitch in the system but the result of several interrelated and intrinsic flaws—flaws that are, in surprising ways, the product of medical science’s evolution over the past century and a half." Read more here:

Testing has become so advanced that doctors now miss important elements of diagnosis.

04/30/2026

Dear PFPS US Safety Champions and Friends,

Battelle is seeking nominees to serve on its Partnership for Quality Measurement (PQM) committees, including Endorsement and Maintenance (E&M), Pre-Rulemaking Measure Review (PRMR), and Measure Set Review (MSR). These committees are designed to represent a variety of voices and perspectives, including clinicians, healthcare facilities, rural health professionals, purchasers, payers, policymakers, researchers, patients and caregivers, and more.

Submit a nomination by June 1: https://p4qm.org/join-a-committee

Learn more about PQM and how our community—which represents perspectives from across the continuum of care—works to advance U.S. health care quality through vigorous measure evaluation and consensus-based recommendations.

04/29/2026

Join us May 11-12 for the 2026 Science of Patient Engagement Summit! The Summit will explore how meaningful patient engagement leads to better healthcare. Leaders across industry, health systems, and the patient community will gain concrete knowledge on how engaging patients early strengthens innovation, improves adoption, and leads to better outcomes.

Register now by May 1:

2026 Science of Patient Engagement Summit: Turning Evidence into Impact Home Register Schedule Speakers Event Location & Travel Event Policies Sponsors Call for Abstracts CAE Credits Photos (Coming Soon) Patient […]

04/28/2026

The need for trauma-informed care spans beyond patients who live with PTSD. Its necessity is vast when taking a broader range of experiences into account:

➡57.8 million adults in the US live with a mental illness, and 5 percent of Americans have PTSD at any given time.
➡50 million live with chronic pain, and 24.4 million suffer high-impact chronic pain that limits their ability to work, socialize, or attend to self-care.
➡An estimated 54 million people live with a disability.
➡Up to 30 million people live with a rare disease.
➡An estimated 5.4 million adults in the US live with autism.
➡According to the CDC, 129 million Americans live with a chronic illness.

In addition, while we do not have specific numbers for medical trauma, the National Child Traumatic Stress Network reports that up to 80 percent of ill or injured children and their families experience traumatic stress reactions following a life-threatening illness, injury, or painful medical procedure.

The very act of struggling with a medical condition can lead to trauma, as well as getting a dreaded diagnosis of a chronic or life-threatening illness. Seeking diagnosis is also a factor because it takes an average of 8 to 10 years to be diagnosed with a rare disease, and it takes about the same amount of time to be diagnosed with endometriosis, a relatively common condition. The process takes its toll mentally, physically, and financially.

The need for trauma-informed care spans beyond patients who live with PTSD. A patient advocate offers advice for supporting patient-centered practices that promote safety, empowerment, and healing.

04/24/2026

New! The WHO's Results Report, highlighting improvements in people's health worldwide. The report finds significant progress across all three “Triple Billion” targets under WHO’s Thirteenth General Programme of Work (GPW13) for 2019–2025:

🌎 an estimated 567 million additional people were covered by essential health services without experiencing catastrophic health spending in 2025, compared with the baseline in 2018 – an increase of 136 million since 2024

🌎 an estimated 698 million additional people were better protected from health emergencies in 2025, compared with the baseline in 2018 – an increase of 61 million since 2024

🌎 an estimated 1.75 billion additional people living healthier lives in 2025, compared with the baseline in 2018 – an increase of 300 million since 2024.

Read more here:

The World Health Organization (WHO) today released its Results Report, highlighting measurable improvements in people’s health worldwide in 2025, despite funding cuts affecting both the organization and the broader global health sector.

04/17/2026

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 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.

PFPS US also would like the ability to call on you to contribute the patient voice to opportunities like these as they come up:

🌎 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.

🌎 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.

🌎 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.

🌎 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.

🌎 Ongoing work to get Project PIVOT questions tested and ready for use in patient experience surveys and research.

Learn more here ⬇️

https://www.pfps.us/become-a-champion

Patient Engagement and empowerment is perhaps the most powerful tool to improve patient safety.

04/13/2026

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! https://www.pfps.us/become-a-champion

Patient Engagement and empowerment is perhaps the most powerful tool to improve patient safety.