🥳 Tooting my own horn 🥳

Just got back from a 1-week road trip vacation and learned... 3 papers were published while I was away!

Here's a quick #medthread 🧵about an epic week of publishing w/friends—what we learned, and what we created!
#AcademicTwitter #patientresearchers Have you ever been asked to peer-review a manuscript and wondered if you were "doing it right?"

You are me.

@crblease & I published a template to help organize the thoughts of newbie reviewers (including patients).
informatics.bmj.com/content/28/1/e…
#academictwitter #patientresearchers

Dear oncology: We wrote this paper for you & it was published in @Cancer_Cell.

>10 yrs of research shows pts benefit when they read their clinical notes (#opennotes) however oncologists have been resistant to the practice.

#medthread 🧵 #MedTwitter 1/9
cell.com/cancer-cell/fu… - I've read every paper on #opennotes
- I've presented about open notes at @ASCO & @AACR
- I'm connected w/the cancer patient community

I noticed:
- Pts are positive about the idea of open notes
- Oncologists are nervous
#bcsm #btsm #lcsm #mmsm #ayacsm #CSSMchat
2/9

@BraveBosom @drdonsdizon @ePatientDave @VinceKuraitis @MightyCasey @draparente @AndreaCoravos @HealthPrivacy @emilykg1 @eperakslis @nickdawson WARNING: This might be a long response.
When it comes to all things, including the adoption of various technologies, each health system prioritizes different things in different orders.
It's not that some things are BETTER than others, they just can't do everything at once. @BraveBosom @drdonsdizon @ePatientDave @VinceKuraitis @MightyCasey @draparente @AndreaCoravos @HealthPrivacy @emilykg1 @eperakslis @nickdawson Before #COVID19--like, years before--some health systems made telemedicine a key priority (e.g., KP Nor Cal). h/t to @RobertPearlMD & @davisliumd
I am no longer a KP Nor Cal pt, but I imagine they were ready to go w/telemedicine, and pts could make appts through the portal.

@ePatientDave @chrissyfarr @DrDannySands The group known as @myopennotes is a research team.

Studying the CONCEPT of #opennotes is not exclusive: anyone can study it! And @myopennotes encourages people to do so!

Today, we are aware of roughly 100 peer-reviewed papers published on the concept of #opennotes. 1/x @ePatientDave @chrissyfarr @DrDannySands @myopennotes Of the 100 papers we know of, about 30% were written by people we don't work with--which is awesome!

So why don't we have all of these papers on the @myopennotes website? 2/x

🌵MED RECORD REQUESTS = WILD WILD WEST🌵

Think it's difficult to ask for a copy of your medical records?

You aren't the only one.

I submitted medical records requests to 3
different California health systems and ended up with 3 different responses.
👇#MedThread #citizenscience I have a patient portal account with three different California health systems.

All are using MyChart by Epic.

The MyChart navigation varies slightly by organization but most should have an option that says "Medical Records Request."

Try it out for yourself!

NEW in #JAMIA:

Large assessment of 1,400 patient/family reports examining patient/family experiences and safety concerns related to visit notes.

Most common concerns:
✔️Description of symptoms
✔️Medications
✔️Health problems
academic.oup.com/jamia/advance-… #ptsafety #opennotes @fcbourgeois @RasuShrestha @BIDMChealth @cmd418 @AtriumHealth @BostonChildrens @jhalamka @TheIHI @AMIAinformatics Paraphrase:

"About 1/4 of 😷/👨‍👩‍👦‍👦 using an online reporting system identified potential documentation inaccuracies in visit notes, of which more than half were considered 'important' by 😷/👨‍👩‍👦‍👦 AND 👩‍⚕️🏥."

👏 to @fcbourgeois and team.

#ptsafety #opennotes

A medical record is like a time capsule.

In July 2008, after a few grand mal seizures & being admitted to the hospital, my best friend's dad drove a few hours to be with me... for a few weeks straight.

An RN documented: "Father at the bedside."
#FathersDay2019 Some of you know I kind of raised myself.
Dad left when I was 1.5.
Latchkey kid at age 5.
Older siblings moved out when I was 8.
Left alone for entire summers starting at 14.
Moved out when I was 17 & a half.

Survival skills? Be a good kid, follow rules, never drink/do drugs.