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OpenNotes
@opennotes.org
510 followers 960 following 120 posts
🚀 Sharing the story of healthcare, one open note at a time.
🌐 Transparency, trust, and teamwork in healthcare.
📖 Advocates for patient access to their medical records.
💡 #OpenNotes | 🩺 #MedSky | 🌟 Join the movement for open healthcare conversations!
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opennotes.org
OpenNotes @opennotes.org · Jan 9
Are you a clinician who shares your notes? ✔️
A patient who reads notes? ✔️
A researcher who studies transparency in clinical documentation? ✔️
Let us know so we can add you to the #OpenNotes starter pack! 💥

#medsky

#btsm

#cansky

go.bsky.app/FYLhysC
OpenNotes' Expanded Universe
Join the conversation
go.bsky.app
Reposted by OpenNotes
s4pm.bsky.social
“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
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.
www.statnews.com
January 13, 2026 at 1:01 PM
opennotes.org
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
January 14, 2026 at 2:01 PM
opennotes.org
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
January 8, 2026 at 2:02 PM
opennotes.org
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
January 6, 2026 at 2:03 PM
Reposted by OpenNotes
thelizarmy.bsky.social
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...
Adam Hayden and Liz Salmi at Stanford.
December 29, 2025 at 2:31 AM
Reposted by OpenNotes
rasushrestha.bsky.social
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...
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.
www.statnews.com
December 31, 2025 at 10:19 PM
opennotes.org
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.
January 2, 2026 at 1:01 PM
opennotes.org
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
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…
buff.ly
December 29, 2025 at 1:01 PM
opennotes.org
Happy holidays! (From our director's dog in a Christmas sweater to yours.)

#Medsky
December 24, 2025 at 1:02 PM
opennotes.org
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
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…
buff.ly
December 22, 2025 at 1:02 PM
opennotes.org
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/...
December 18, 2025 at 1:24 PM
Reposted by OpenNotes
ctlin.bsky.social
Such an honor to attend Dr. Delbanco’s Grandberg lecture and celebration of his career.
opennotes.org OpenNotes @opennotes.org · Dec 4
As we gather with loved ones for the holidays, we think back fondly to gathering the OpenNotes team together in October for Tom Delbanco's Grandberg Dinner at the Harvard Club of Boston.

We guarantee that @cait-desroches.bsky.social's roast of Tom was better than your holiday roast!

#MedSky
December 4, 2025 at 7:47 PM
Reposted by OpenNotes
aci-journal.medsky.social
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
December 7, 2025 at 4:07 PM
opennotes.org
Happy #NationalViolinDay! Did you know our cofounder, Tom Delbanco, MD, is a violinist and music enthusiast?

A professional musician, William Fedkenheuer, played violin in honor of Tom's Grandberg Symposium in Boston.

Will spoke of how he grew closer to Tom while navigating our health system.
December 13, 2025 at 1:01 PM
Reposted by OpenNotes
ksalemoaks.bsky.social
At @s4pm.bsky.social Collaboration is the Best Medicine.
Nurses are integral to our vision of healthcare where patients and families are considered equal partners on the care team.

Nurses get it!

They are trained to notice the subtle changes that could be important.
#nursesareprofessionals
November 26, 2025 at 7:35 PM
Reposted by OpenNotes
s4pm.bsky.social
Collaboration is the best medicine. Patients and providers working together leads to better outcomes.

Nurses are critical to connecting with patients. They listen. They translate. They advise. They keep two-way communication flowing.

#nursesareprofessional
December 11, 2025 at 1:03 PM
Reposted by OpenNotes
ksalemoaks.bsky.social
Have you heard the latest episode of Raising Rare yet?

@medsky.social #participatorymedicine @s4pm.bsky.social @globalgenes.bsky.social @everylifeorg.bsky.social #rarediseases #mentalhealth

www.raisingrare.fm/episodes/rar...
Rare Men, Rare Wellness - David Hogan — Raising Rare
How do you tell whether a zebra is male or female? The male doesn’t’ talk about their #raredisease. This can be hard on them. There have been very few places for them to gather to take care of thei...
www.raisingrare.fm
December 10, 2025 at 2:40 PM
opennotes.org
OpenNotes is recruiting for a new project on an AI Personal Health Assistant. Help co-design a study of a patient-facing scribe/chat tool.

👉 Apply to the OpenNotes Insight Panel: buff.ly/TIDvY65

#PatientAdvocacy #HealthEquity #AIinHealthcare #OpenNotes #MedSky
December 9, 2025 at 1:01 PM
opennotes.org
As we gather with loved ones for the holidays, we think back fondly to gathering the OpenNotes team together in October for Tom Delbanco's Grandberg Dinner at the Harvard Club of Boston.

We guarantee that @cait-desroches.bsky.social's roast of Tom was better than your holiday roast!

#MedSky
December 4, 2025 at 1:02 PM
opennotes.org
This Thanksgiving, we are thankful for our cofounder Tom Delbanco, MD and his 55 years of transforming primary care by looking "through the patient's eyes."

On October 16th, we honored his illustrious career with a Beth Israel Deaconess Medical Center symposium on the future of general medicine.
November 25, 2025 at 2:03 PM
opennotes.org
In this essay in @jama.com, a nephrologist calls for better communication with patients...even when the news is bad.

We wish it were freely available to read, but it is paywalled: www.opennotes.org/research/sli...

#Medsky
Sliver of Hope - Open Notes
In this narrative medicine essay, a transplant nephrologist relates how his reticence to tell a patient that her worsening health status rendered her ineligible for a transplant strengthened his…
www.opennotes.org
November 20, 2025 at 2:02 PM
opennotes.org
Last month, OpenNotes partnered with an innovative retirement community based in Massachusetts: Loomis Lakeside at Reeds Landing.

Yesterday, Loomis Lakeside was featured on NPR for their work humanizing all of their residents, including people who live with dementia:
Dementia housing without locked wards? It's a small but growing movement
Some senior living communities are caring for people with dementia alongside other residents, not segregated behind locked doors.
www.npr.org
November 18, 2025 at 2:03 PM
opennotes.org
We talk about how few minutes patients spend with providers...and forget how long patients spend taking care of themselves.

One patient spent roughly 8,760 hours annually managing her health versus just ONE hour with clinicians.

Read more from @cait-desroches.bsky.social and team: buff.ly/UmeOXOL
November 13, 2025 at 2:21 PM
opennotes.org
If you live in the United States, there's a good chance that you are a care partner.

In honor of #HospiceAndPalliativeCareMonth, read the latest study from @cait-desroches.bsky.social and team: bmcprimcare.biomedcentral.com/articles/10....
November 11, 2025 at 8:47 PM
opennotes.org
Reading medical records can be unsettling—especially when the language feels biased or doesn't seem to match what you think happened.

Read what OpenNoters @cait-desroches.bsky.social and Steve O'Neill recommend when this happens: lnkd.in/eDuxcPc4

www.opennotes.org/research/who...

#MedSky
Whom Should We Regard as a Legitimate Stakeholder in the Accuracy of Information in a Patient’s EHR? - Open Notes
This case describes a care partner who was distressed by bias and inaccuracies in a loved one's medical notes. Steve O'Neill LICSW, BCD, JD and Catherine M. DesRoches, DrPH, MSc offer guidance on how ...
www.opennotes.org
November 11, 2025 at 6:37 PM