OpenNotes

Today is #WorldKidneyDay and it's time to include patient voices in the way that life-saving organ transplants are evaluated.

Read this Viewpoint published in @JAMA.com by Aditya S. Pawar, MD, Tom Delbanco, MD and Randall S. Stafford, MD, PhD, (paywalled 🔓 ): buff.ly/7mkAd7n

#MedSky

Patient Safety Awareness Week: AI and Health Care: Implications for Safety and Quality as the Field Matures Join Dr. Robert Wachter for this Lucian Leape Institute (LLI) webinar as he examines the rapid rise of generative artificial intelligence (AI) in health care and what it means for quality, safety,…

Generative artificial intelligence (AI) in health care is on the rise. What does it mean for quality, safety, cost, and the clinician experience?

@ihi.org is hosting a webinar with Dr. Robert Wachter.

📅 3/12
⏰ 11 AM–12 PM ET
🎟️ Free

Sign up today: buff.ly/UkRbE5d

#MedSky #PatientsUseAI

Why I decided to share all my health information with ChatGPT Health “I don’t think people should have to go through 18 years of brain cancer to understand their own health records,” writes Liz Salmi.

@thelizarmy.bsky.social offers insights from beta-testing OpenAI’s new Health GPT.

As a longtime advocate for healthcare transparency who shares her health records publicly, she urges others to think critically before doing the same.

Read more in @stat-statnews-com.1440.news:

Mental health notes are now open in Canada! 🇨🇦

CAMH, Canada’s largest mental health and addiction teaching hospital, recently released the 'Nothing About Me, Without Me (including My Health Record)' project: lnkd.in/eQ8aFTit

#Medsky #PatientVoice #PatientExperience #DisabilityJustice

Opinion | Stop Worrying, and Let A.I. Help Save Your Life A.I. isn’t perfect, but it doesn’t have to be to improve medicine.

In @nytopinion.nytimes.com

“A.I. doesn’t have to be perfect to be better. It just has to be better,” writes Robert Wachter.

Take It From a Doctor: It’s OK if Your Medical Advice Comes From A.I. As a practicing physician, I know that my patients are using artificial intelligence to get medical advice. Sometimes the signs are subtle, like when they bring me lists of suggested tests and potential diagnoses that would put Dr. House to shame.

Are you being honest with your clinician about your AI use?

@adamrodmanmd.bsky.social offers advice in the @nytimes.com for people using LLM chatbots to understand their health.

He says honesty is the best policy... and your doctor is probably using AI as well.

buff.ly/pNeUJlD

#PatientsUseAI

Mental health notes are now open in Canada! 🇨🇦

CAMH, Canada’s largest mental health and addiction teaching hospital, recently released the 'Nothing About Me, Without Me (including My Health Record)' project: lnkd.in/eQ8aFTit

#Medsky #PatientVoice #PatientExperience #DisabilityJustice

Why I decided to share all my health information with ChatGPT Health “I don’t think people should have to go through 18 years of brain cancer to understand their own health records,” writes Liz Salmi.

@thelizarmy.bsky.social offers insights from beta-testing OpenAI’s new Health GPT.

As a longtime advocate for healthcare transparency who shares her health records publicly, she urges others to think critically before doing the same.

Read more in @stat-statnews-com.1440.news:

From asking whether healthcare transparency even matters to defining critical AI health literacy...read our top editorials from 2025:

1. buff.ly/fzuYsIH
2. buff.ly/Z86SZ1H
3. buff.ly/h83Z9v6
4. buff.ly/7tdpYKq
5. buff.ly/fdsBCua
6. buff.ly/ljGoPyP
7. buff.ly/e7o7TwM

#MedSky #PatientVoice

Liz Salmi holding a guest badge with information redacted in San Francisco.

I spent the weekend taking OpenAI’s new #HealthGPT for a spin. 🤓

Naturally, I connected 3 health systems, uploaded a 4,800-page PDF of my medical history & ran my own mini-study with custom prompts.

Curious about the experiment, my “protocol” & what didn’t work?
www.thelizarmy.com/blog/my-firs...

What happens when your care partner is abusive and has access to your patient portal?

Read this timely and thoughtful piece offering practical guidelines for documenting IPV in trauma-informed, patient-centered ways in the Journal of the Academy of Forensic Nursing: buff.ly/igwc0iX

#MedSky

It’s been another year of publications that are making healthcare more transparent 🙌

Have a look at some of our research from 2025.

1. buff.ly/VpHABZ5
2. buff.ly/aiXDy7f
3. buff.ly/h4QLdxm
4. buff.ly/KQ0i8Le

@cait-desroches.bsky.social @thelizarmy.bsky.social

More in the thread to follow.

Transparency can be a powerful force for tech equity so that every patient has the opportunity to engage in their care.

Read about "techquity" in this @ascocancer.bsky.social editorial by
@cait-desroches.bsky.social and @thelizarmy.bsky.social ascopubs.org/doi/10.1200/...

#MedSky #CanSky #BTSM

Two more publications from last year...and many more to come this year.

9. buff.ly/FDgD8VJ
10. buff.ly/5BSTJwa

#MedSky #PatientVoice #HumanCenteredDesign #DesignResearch

Here are four more of our 2O25 papers 📅

5. buff.ly/5BSTJwa
6. buff.ly/aiXDy7f
7. buff.ly/NNgoREC
8. buff.ly/Fy19tGF

In 2026, we’ll continue to identify and disseminate best practices for sharing medical information with patients and care partners.

#PalliativeCare #PatientsUseAI #MedAI

It’s been another year of publications that are making healthcare more transparent 🙌

Have a look at some of our research from 2025.

1. buff.ly/VpHABZ5
2. buff.ly/aiXDy7f
3. buff.ly/h4QLdxm
4. buff.ly/KQ0i8Le

@cait-desroches.bsky.social @thelizarmy.bsky.social

More in the thread to follow.

What I got wrong 33 years ago as a new pediatrician talking to parents about vaccines Thirty-three years ago, as a new pediatrician, RWJ CEO Richard Besser had a conversation about vaccines with two parents-to-be. It still sticks with him.

“My first mistake was talking instead of listening. I should have slowed down. I should have given them the time and space to explain their thought process. I should have given myself the time to empathize with their perspective.”

@statnews.com #MedSky #ParticipatoryMedicine

buff.ly/WZ2dhj5

Please fill out this form if you're interested in participating in spring co-design sessions: forms.office.com/pages/respon...

We are launching a new study focused on how older adults understand and access the notes that doctors write after a visit. We’d love your help.

Reply if you're 75+ or a care partner to an older adult and want to participate. A $100 honorarium per session will be offered if selected.

#MedSky

Hospital discharge is a high-risk moment...but patients can be part of the safety solution.

At the end of last year, Sigall Bell, MD, @cait-desroches.bsky.social @thelizarmy.bsky.social and Nicholas Nguyen led a design jam session on the topic at @IHI.org Forum in Anaheim, CA.

#MedSky

Patients are increasingly using generative AI.

@hugoc.bsky.social and @thelizarmy.bsky.social introduce “Critical AI Health Literacy” as a new skill set for patients seeking agency and equity in the digital age of medicine.

Read more on @nam.edu: nam.edu/perspectives...

#PatientsUseAI #MedSky

Adam Hayden and Liz Salmi at Stanford.

A first-person remembrance of @adammarc.bsky.social—brain cancer advocate, writer, punk philosopher & dear friend. Our friendship shaped my approach to survivorship through his guiding truth: “The best way through fear is familiarity.”
www.thelizarmy.com/blog/adam-ha...

An advocate who offered a window on the experience of living with brain cancer dies at 43 Adam Hayden, a patient advocate and the subject of an earlier profile in STAT, has died at age 43.

Adam Hayden, a prolific observer of his own condition, took a bad situation and did ‘good things with it’

RIP @adammarc.bsky.social 💔

#BTSM @thelizarmy.bsky.social @sabine-nj.bsky.social @mcintose.bsky.social @shawncarey42.bsky.social @stuartselby.bsky.social

www.statnews.com/2025/12/22/a...

The name of the game is "Publish or Perish" and some of our team's researchers have been playing it for decades.

In October, @ctlin.bsky.social, @thelizarmy.bsky.social and @epatientdave.bsky.social gathered in our Boston office and played this all-too-real board game from @chethan.bsky.social.

What is the Double Diamond Design Process? A guide for people that want to understand design in both the problem and solution · The duality of divergent and convergent thinking · The history of the Double Diamond · The 4 D's of the Double…

Have you read our latest paper on using human-centered design (HCD) to improve patient portal shared access?

If you haven't...have a look: buff.ly/p8ILqG4

We used the Double Diamond method to collect feedback from end-users and iterate. Read more about DDM: buff.ly/XQe8jCc

#Medsky #Design

Happy holidays! (From our director's dog in a Christmas sweater to yours.)

#Medsky

OpenNotes Cofounder Tom Delbanco's Grand Rounds Lecture Watch the recording of Tom Delbanco's Grandberg Lecture—where he reflected on his 55-year journey to transform primary care. From listening more deeply to patients to launching a global transparency…

Hear from our cofounder about where it all began.

Tom Delbanco, MD recounts his 55-year journey to transform primary care. This Grandberg Lecture was part of Beth Israel Deaconess Medical Center's Grand Rounds.

Watch the whole lecture: buff.ly/ReWYQhC

#Medsky

We want people who speak any language and come from any background to access their medical notes.

This study looked at how ethnicity, race, and language impacted who was opening their notes. Read more from researchers at @mskcancercenter.bsky.social (paywalled 🔒 ) : ascopubs.org/doi/10.1200/...

Such an honor to attend Dr. Delbanco’s Grandberg lecture and celebration of his career.

NEW: Solutions for Increased Adoption of #PatientPortal Shared Access: A Human-Centered Design Approach Using the Double Diamond Model www.thieme-connect.de/products/ejo...

#MedSky #HumanCenteredDesign #HCI #usability @thelizarmy.bsky.social @cait-desroches.bsky.social @opennotes.org