#MondayMorning 🧵

Repeat after me:

Patient burnout is an undocumented public health crisis. 🚨 2) #PatientAdministrativeBurden (PAB), or the work that individuals need to do to get the care they need, is of epic proportions, especially in the context of chronic illness, multiple co-morbidities, life-altering, and life-limiting conditions. 📈

#MissionImpossible #PtExp

#MondayMorning 🧵

Too many stakeholders are missing the point of the #InformationBlockingRules and patient's having access to THEIR health information.

For the record:
👉It's not only about access for access sake. It's not just about seeing a result. 👀 2) 👉It's about access for ACTION's sake. 🚀

🧵Imagine your loved one is being treated for advanced, aggressive cancer and they are hospitalized for poorly managed treatment-related side effects.

While in the hospital, they test positive for #COVID19, further deteriorate, & are placed on a ventilator. 2) You can not visit your loved one bc they are in the #COVID19 critical care unit.

You are getting phone call updates but the information is fragmented. You know the care team is doing the best they can & appreciate the care your loved one is receiving.

1) Over the last 2 weeks, I've been jotting down words & statements from various conversations & interview questions I have been asked.

These words stick out like a sore thumb. What are these words, you ask? 2) Too helpless
Too timid
Not smart enough
Incapable
Too oblivious
Indifferent
Uneducated
Could care less
Too anxious
Too lost
Not committed enough
Wrong priorities
Lazy
Can’t handle it
Too weak
Too vulnerable
Difficult
Ignorant
Apathetic
Complicated
Rude
Too hysterical
Selfish

(Thread) Reflecting today after an incredible few days in Washington DC at #HDpalooza & #NHPC20 which gave attendees the best of both health data & health policy innovation worlds. @RasuShrestha @ePatientDave @BeLikeLight @vishnu_saxena @DrSimpsonHSR @HealthPrivacy @coffeemommy @KBDeSalvo @fredtrotter @DCPatient 2) How can I express how grateful I am to have attended as a patient scholar?! What an amazing, enriching experience! Thank you @AcademyHealth for continuing to prioritize & model #PatientsIncluded! Clearly it can be done. Conference organizers, take note. #HDPalooza #NailedIt

Lots of thoughts & opinions on patient #DataAccess & data sharing, figured I'd jump in. Take a seat for a few. I'll make it worth your while.

THREAD 👇👇

#PatientAdvocacyProblems #UnblockHealth #hcldr #hitsm #medtwitter @S4PM #EHR #DataBlocking #pinksocks #PtExp @S4PM 1) A patient with multiple comorbidities has been in & out of the hospital w/what now has been diagnosed as advanced congestive heart failure. At about 5 pm yesterday (Fri), patient & family were told to seek a 2nd opinion asap. Told patient being discharged today. #UnblockHealth

1) So you get a copy of your medical records & dive in, reading line by line, trying to make sense of your new lung #cancer diagnosis.

“Wait a second, this doesn’t sound right. This is a mistake. I don’t have a history of a heart condition & I don’t smoke cigarettes.
#PtExp 2) You call your oncologist’s office to report the mistakes you found & ask to have it updated. You are told to write down the correction & fax it to the office. You do exactly that.
#PtExp #addendum #EHR

Major points here (thread):
👉outrageous, disgraceful, not surprising as its cut throat business as usual; guarantee @Facebook isn’t the only organization doing what it takes to get ahead #transparency #privacy #SocialMedia #data #hcldr #ThursdayThoughts

techcrunch.com/2019/01/29/fac… 2) 👉@Apple didn’t “know” until the headlines broke & they want to be the “guardian of our health” 🤨 Please 🤯 #transparency #privacy #SocialMedia #data #healthcare #digitaltech #innovation #hcldr

Apple has a section of their website answering questions doctors may have regarding their latest #ECG technology. Where are the answers to the REAL questions #patients want to know about? For example, if I get an alert:

#AppleWatch #digitaltech #wearables #PatientAdvocacy 1) who do I call: my primary care physician (PCP), #cardiologist, or 911? #AppleWatch #digitaltech #digitalhealth #wearables #Innovation #PatientAdvocacy #healthcare #medtwitter

Dear #hospitals:

Your discharge planning sets #patients up for failure. How? Let me explain (again, & again, & again). #PtExp #PtSafety #PtEng #EHR #interoperability #PatientAdvocacy #medtwitter #GMDD #hcldr

Photo Credit: Rob Potter (Unsplash) 1)Follow up appts, essential to a patient’s health & recovery, are listed as part of the discharge summary. These appts are recommended to be scheduled within 7-10 days. To be best prepared, patients need their records. #healthcare #PtExp #PtSafety #PtEng #EHR #GMDD #medtwitter