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
3) All of these words were used in the context of improving #PtEng, #PtExp, & #PatientAccess.

Do you know who the words above are describing?

All of these words were used in the context of describing patients.
4) Is this really how we see patients?

The words we use matter. Always.
5) I have the privilege of knowing & collaborating with some of the most amazing patients & careparters, from all walks of life, from different parts of the country & world.
6) They are none of the above words.

They are instead:
determined, curious, passionate, great at setting boundaries, intelligent, intuitive, organized, committed, loving, motivated, helpful, empathetic, sacrificing, great teachers, super connectors, awe-inspiring, educators.

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More from @GraceCordovano

12 Feb 20
(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
@RasuShrestha @ePatientDave @BeLikeLight @vishnu_saxena @DrSimpsonHSR @HealthPrivacy @coffeemommy @KBDeSalvo @fredtrotter @DCPatient 3) The takeaways are clear:

👉Patients have a RIGHT to their health data & the boundaries of access, control, #privacy, & choice have never been questioned, contemplated, & examined more or pushed farther than ever before.

#HDPalooza #NHPC20 #PatientsIncluded #UnblockHealth
Read 7 tweets
18 Jan 20
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
@S4PM 2) The urgent 2nd opinion is to see if the patient is a candidate for a particular procedure. If not, #hospice. Appt can’t be scheduled until ALL records & images on CD are received & reviewed by the 2nd opinion dr’s office (at another hospital, in another state.) #UnblockHealth
Read 19 tweets
11 Oct 19
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
3) At your next follow up appt a month later, you ask the dr if your record was updated & the correction was made.

The dr looks at you like:

#PtExp #addendum #EHR
Read 16 tweets
31 Jan 19
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
3) 👉targeting children & their #data needs to be recognized as digital trafficking & punishable by law #transparency #privacy #SocialMedia #data #healthcare #digitaltech #innovation #hcldr
Read 6 tweets
12 Dec 18
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
2) when do I confidently ignore, act upon, or wait to make actionable decisions about alerts I’ve received? #AppleWatch #digitaltech #digitalhealth #wearables #Innovation #PatientAdvocacy #healthcare #medtwitter
Read 7 tweets
12 Jul 18
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
2)All records from a patient's hospital admission should be AUTOMATICALLY sent to every listed follow-up physician. Hospitals, you know which drs patients need to see; it’s listed in the discharge plans. This step needs to be embedded in the workflow #PtExp #EHR #interoperability
Read 14 tweets

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