OpenNotes

It's hard to get patients and care partners sharing access to the portal... but there are some new recommendations in the latest research.

Read the Coalition for Care Partners' latest issue brief: publichealth.jhu.edu/sites/defaul...

#CarePartners #MedSky #PatientOutcomes

In 2020, more than 50 million patients in the U.S. and Canada gained access to their notes.

In 2021, the Cures Act went into effect and the concept of open notes became the “law of the land.”

Read more about our history: www.opennotes.org

#MedSky #CanSky #PatientEngagement #PatientExperience

In 2016, @cait-desroches.bsky.social joined OpenNotes as our first Executive Director.

That same year, 10 million Americans were able to choose to read their medical notes online.

Read more of our history: www.opennotes.org/history/

#medsky #patientexperience #patientengagement #patients #cansky

In the first published OpenNotes study, few patients were worried or confused by their notes.

In 2012, health systems made plans to adopt open notes.

In 2013, the VA adopted open notes as well.

Read more of our history: www.opennotes.org/history/

#medsky #patientexperience #patientengagement

What If Patients See Their Notes First? | Swaay.Health Clinicians write thousands of notes. For years, patients rarely saw them. But in the U.S. it's now the law that patients can access their clinical notes. So what happens when they do? Turns out, they’...

@thelizarmy.bsky.social and @cait-desroches.bsky.social sit down with @colinhung.bsky.social of @swaay.health to dispel misconceptions about open notes.

Not only are open notes not a detriment — they are actually beneficial to patients and clinicians.

Listen in: swaay.health/2025/07/21/w...

Sharing the medical record is a part of humanizing medicine.

Read the questions that Budd Shenkin proposes in the Journal of Pediatrics: www.sciencedirect.com/science/arti...

What are some questions you think we should be asking ourselves about the healthcare system?

What if THESE were the questions we were asking in medicine? 💊

1️⃣ Is there someone who connects with the patient on a regular basis?

2️⃣ Are clinicians given enough time per patient?

3️⃣ Are clinicians given enough helping staff?

Read the full article: www.sciencedirect.com/science/arti...

In 1998, patient portals entered the picture.

In 2010, OpenNotes launched its first exploratory study funded by the Robert Wood Johnson Foundation.

Read more of the history on our website: www.opennotes.org/history/

#medsky #cansky #patients

In 1991, there was hope that the electronic health record would change medicine.

In 1996, the Health Insurance Portability and Accountability Act (aka HIPAA) was signed by into law by President Clinton.

Read more of the history on our website: www.opennotes.org/history/

#medsky #cansky #patients

Older adults are living longer and redefining what it means to age, but is our country equipped to help them thrive as they age?

Get the answer by watching Aging in America: Survive or Thrive, a PBS documentary. Request a screening and guide: aginginamericasurviveorthrive.com/contact/

#MedSky

Medical notes are available to patients, but are hospitalized patients actually using them?

See who was less likely to have an active patient portal account: pubmed.ncbi.nlm.nih.gov/40474464/

@cait-desroches.bsky.social

#MedSky #DigitalHealth #PatientExperience

What makes patients feel judged or offended by their medical notes?

A 2021 study found that these three categories throw patients off: errors and surprises, labeling, and disrespect.

Find out what language doesn't work: link.springer.com/article/10.1...

#MedSky #DigitalHealth #PatientExperience

We're glad it spoke to you, @amyprice.bsky.social !

It was a meeting of the minds last week at @harvard.edu!

@cait-desroches.bsky.social spoke on Thursday at the DCI Network conference on Digital Patient Engagement.

Pictured from L to R with Cait: @amyprice.bsky.social, Brad Crotty, MD, @epatientdave.bsky.social, Danny van Leeuwen, MPH

#medsky

Can AI translations of medical test results reduce confusion and anxiety for patients? Can AI translations of radiology reports reduce patient confusion and anxiety? Two studies explore how AI helps decode complex test results.

“Most people don’t speak radiology,” @thelizarmy.bsky.social said. “When I have received imaging results on my own, the technical language can feel impenetrable. It can be confusing, scary, or misleading.”

Read more: www.uchealth.org/today/can-ai...

#cansky #medsky #btsm #patientexperience

In 1973, A New England Journal of Medicine ran an article called “Giving Every Patient His Medical Record: A Proposal to Improve the System."

This is where Part 1 of the History of OpenNotes timeline begins.

Read more of the history on our website: www.opennotes.org/history/

#medsky #cansky

Happening next week!

Learn the latest on AI and patients next week at Harvard University.

Join @cait-desroches.bsky.social and Bradley Crotty MD MPH for a session led by Leon Rozenblit called Digital Tools Reshaping Patient Experience.

Register here: www.dcinetwork.org/patients2025...

#medsky

Happening next week!

Learn the latest on AI and patients next week at Harvard University.

Join @cait-desroches.bsky.social and Bradley Crotty MD MPH for a session led by Leon Rozenblit called Digital Tools Reshaping Patient Experience.

Register here: www.dcinetwork.org/patients2025...

#medsky

Mark Rothko begrudgingly allows me to show him off to the Internet.

Mark Rothko reviews a recent article in Health Affairs.

Every day is #BringYourCattoWorkDay when your office is wherever your laptop is—and when your cat is Mark. He’s a quiet, judgment-free partner when I’m reading new research or editing manuscripts, which is more than I can say for some peer reviewers.

#reviewer2 #reviewerMew #academiclife

Happening tomorrow!

@cait-desroches.bsky.social, Deborah W. Wachenheim, MPP, and Rosie Bartel will be joining the PFAnetwork coffee chat
to discuss their ongoing research on shared access to the patient portal.

📅 Friday, June 13
⏰ 12-1pm EST/9-10am PST

Register: us02web.zoom.us/meeting/regi...

Chat with us!

📅 Friday, June 13
⏰ 12-1pm EST/9-10am PST

@cait-desroches.bsky.social, Deborah W. Wachenheim, MPP, and Rosie Bartel will be joining the PFAnetwork coffee chat
to discuss their ongoing research on shared access to the patient portal.

Register today: us02web.zoom.us/meeting/regi...

Chat with us!

📅 Friday, June 13
⏰ 12-1pm EST/9-10am PST

@cait-desroches.bsky.social, Deborah W. Wachenheim, MPP, and Rosie Bartel will be joining the PFAnetwork coffee chat
to discuss their ongoing research on shared access to the patient portal.

Register today: us02web.zoom.us/meeting/regi...

We are out in the world talking about how #PatientsUseAI!

@cait-desroches.bsky.social spoke last month at the Symposium on Artificial Intelligence for Learning Health Systems (SAIL) conference in Río Grande.

Read our latest research on LLMs: www.opennotes.org/research/pro...

#medsky #AI

Did you know that 1/2 of Americans with Alzheimer's and related dementias do not receive a diagnosis?

In honor of Alzheimer's and Brain Awareness Month this June, read this research from 2023: alz-journals.onlinelibrary.wiley.com/doi/10.1002/...

#ENDALZ #ShowYourPurple #medsky #NIAAlzheimers

Did you know that one-third of people living with dementia receive care from many providers without a clear lead clinician?

In honor of Alzheimer's and Brain Awareness Month this June, read this 2024 study: agsjournals.onlinelibrary.wiley.com/doi/10.1111/...

#ENDALZ #AlzScience #BrainWeek #medsky

More from the AMIA Clinical Informatics Conference #CIC2025

@thelizarmy.bsky.social with Rob Turer @scottmacdonald86.bsky.social and Bryan Steitz

Read their latest paper on refresh and messaging behaviors as possible signs of patient anxiety. 😵‍💫

www.opennotes.org/research/rep...

#medsky #cansky

When you get great minds in a room, that's when innovation happens!

@chethan.bsky.social and @thelizarmy.bsky.social saw Christopher Longhurst, Executive Director of Jacobs Center for Health Innovation @jchi-ucsd.bsky.social at the AMIA Clinical Informatics Conference #CIC2025

#medsky #cansky

Users’ perspectives on a demonstration to increase shared access to older adults’ patient portals - BMC Health Services Research Background Many patient portals allow patients to authorize a care partner to use the portal on their behalf, with evidence suggesting a range of benefits to patients, care partners, and clinicians. S...

If shared access to patient portals helps care partners...why aren’t more people using it?

To test this in the real world, the Coalition for Care Partners led a 12-month demonstration.

Read what patients, care partners, and physicians had to say: bmchealthservres.biomedcentral.com/articles/10....

How my personalized AI health consultant helps me answer ‘WTF’ medical questions As someone who’s had autoimmune and allergy issues most of my life, I’ve become somewhat accustomed to my body doing bizarre and…

How are patients using AI?

OpenNotes Lab advisory board member Katie McCurdy tried using Claude to answer some unsolved medical mysteries.

Within minutes, she had answers to some of her longtime questions.

Read on: katiemccurdy.medium.com/how-my-perso...

#PatientsUseAI #MedSky #PatientExperience

#PatientEngagement #PatientExperience #AI