CRITIQUE MY SLIDES!
Earlier this week I delivered a presentation to a patient/family advisory council (PFAC).

I talked about #opennotes & also alerted these leaders to #interoperability and FHIR APIs...

w/o saying "interoperability" or "FHIR APIs."

Did I get it right?
Slide 1 Link all your health information together
🌊
As a wave of health information begins to hit patient portals, many are seeing records for the first time.
🌊🌊🌊
Orgs must collaborate w/their patient advisory councils ASAP to design messaging for patients (& their communities) about what they now possess.

Slide 2 Share your health information with others
⚡️
And while some aspects of the @ONC_HealthIT are not yet reality...
🧑‍🏫
Educating patient/family advisors NOW is crucial to ready organizations for a near future when people may share their information with any entity... anywhere... regardless of privacy policy.

Slide 3 /fin Send information to your care team

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More from @TheLizArmy

9 Oct 20
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
My colleagues at @myopennotes have conducted studies of pts & clinicians with survey responses in the tens of thousands, but we had never dug into the oncology-specific data... UNTIL NOW.

QUESTION
How do oncology clinician views differ from those of their patients? 3/9
Read 10 tweets
2 Apr 20
@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.
@BraveBosom @drdonsdizon @ePatientDave @VinceKuraitis @MightyCasey @draparente @AndreaCoravos @HealthPrivacy @emilykg1 @eperakslis @nickdawson @RobertPearlMD @davisliumd Also before #COVID19, health systems may have been piloting various telehealth platforms--some native to the health system platform w/their own docs, and some using 3rd parties like @teledoc.
I had a televisit in Dec. 2018 and my health system used a 3rd party platform.
Read 13 tweets
28 Jan 20
@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
@ePatientDave @chrissyfarr @DrDannySands @myopennotes If we link to all "#opennotes" papers on our site it would imply that we READ all of the papers and judged them for their quality/scientific validity and now approve of them.

Sadly, we don't have the bandwidth/capacity to review the entire body of work. 3/x
Read 4 tweets
20 Dec 19
🌵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!
Organization A has an online form that can be completed inside of MyChart. They warn the user that there could be a 15-day delay.

👀 Users must OPT-IN to allowing their information to be sold. Love that.

I dig that people can sign electronically; no printing/faxing.

👏Org A!
Read 7 tweets
7 Sep 19
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
@fcbourgeois @RasuShrestha @BIDMChealth @cmd418 @AtriumHealth @BostonChildrens @jhalamka @TheIHI @AMIAinformatics Why is this important?
"... highlights the possibility... clinicians & patients/families may further enhance the ability to effectively capture potential safety issues."

&

As #HealthIT transparency grows, orgs need ways to capture & respond to patient feedback about EHR errors.
Read 4 tweets
16 Jun 19
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.
That's why, at age 29, it was REALLY hard/weird for me to accept help after receiving a brain tumor diagnosis.

However, you kind of NEED help when suddenly diagnosed with a life-threatening condition and are having seizures.
Read 6 tweets

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