Enlightening Results ๐Ÿ’ก Profile picture
Mar 6, 2023 โ€ข 12 tweets โ€ข 7 min read โ€ข Read on X
#MondayMorning ๐Ÿงต

Repeat after me:

Patient burnout is an undocumented public health crisis. ๐Ÿšจ
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. ๐Ÿ“ˆ

#MissionImpossible #PtExp
3) Patients are buried in:
๐Ÿ‘‰ piles of paperwork
๐Ÿ‘‰ fragmented, manual, poorly coordinated workflows
๐Ÿ‘‰ massive losses of time in waiting and navigating uncharted, unsupported care journeys
๐Ÿ‘‰suffering

#PtExp #Healthcare #UnblockHealth
4) Traditionally underserved, marginalized communities and immigrant populations suffer silently in survival mode, facing too many barriers to accessing the care they need. ๐Ÿ’”
5) Status quo response: wave a shaming finger at patients, summarize the state-of-affairs w/labels
๐Ÿ‘‰ non-compliant
๐Ÿ‘‰ non-adherent
๐Ÿ‘‰ lazy
๐Ÿ‘‰ stupid
๐Ÿ‘‰ illiterate
๐Ÿ‘‰ hysterical
๐Ÿ‘‰ drug-seeking
๐Ÿ‘‰ frequent flyer
๐Ÿ‘‰ difficult
๐Ÿ‘‰ demanding
๐Ÿ‘‰ googling
๐Ÿ‘‰ poor historian
๐Ÿ‘‰ unengaged
6) We push patient behavior change as the holy grail of patient engagement, solidifying the patient is the one to blame.

#PtExp #PtEng
7) Providers discourage patients from using their portals & sending too many messages.

We scoff at patients who "do their own research" while limiting access to credible info behind paywalls & subscriptions.

It's as if we fear an enlightened patient/participant in their care.
8) It's as if we fear a level playing field.

๐Ÿ“Œ FACT: 9 times out of 10, the patient is NOT the problem; it's the ECOSYSTEM that needs the behavior change.

#UnblockHealth #PtExp
9) Reducing, if not completely eliminating, Patient Administrative Burden should be on every ๐Ÿ‘ stakeholders ๐Ÿ‘ priority ๐Ÿ‘ list ๐Ÿ‘.

Including the patient, carepartner, and caregiver perspective is critical in all design, development, and innovation life cycles. ๐Ÿ’ก
10) Diverse representation is ๐Ÿ”‘.
11) Connecting patients and their loved one's to the tools and technology they need to make informed decisions about their care is necessary.

#DigitalHealth can pave the way to success for ALL patients.

#HealthEquity #Techquity
12) What is an example of #PatientAdministrativeBurden you have encountered while trying to get the care you, or your loved one, needed?

Sound off below ๐ŸŽ™๏ธ

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More from @GraceCordovano

Jan 9, 2023
#MondayMorning ๐Ÿงต

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

For the record:
๐Ÿ‘‰It's not only about access for access sake. It's not just about seeing a result. ๐Ÿ‘€
2) ๐Ÿ‘‰It's about access for ACTION's sake. ๐Ÿš€
3) Ability to strategically operationalize when you have
โœ…chronic illness
โœ…life-altering, life-limiting condition
โœ…#RareDisease
โœ…#disability
makes all the difference in
๐Ÿ‘‰outcomes
๐Ÿ‘‰#PatientSafety
๐Ÿ‘‰care coordination
๐Ÿ‘‰costs
๐Ÿ‘‰access to community supports
๐Ÿ‘‰access to research
Read 9 tweets
Feb 3, 2022
๐ŸงตImagine 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.
3) A week goes by, you receive a phone call that your loved one is dying. You receive permission to come say goodbye.

You leave the hospital in a daze, shocked, overwhelmed with grief by the downward spiral of events. A mindboggling tragedy.
Read 12 tweets
Sep 1, 2021
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
Canโ€™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.
Read 6 tweets
Feb 12, 2020
(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:

๐Ÿ‘‰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
Jan 18, 2020
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 ๐Ÿ‘‡๐Ÿ‘‡

#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 canโ€™t be scheduled until ALL records & images on CD are received & reviewed by the 2nd opinion drโ€™s office (at another hospital, in another state.) #UnblockHealth
Read 19 tweets
Oct 11, 2019
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.

โ€œWait a second, this doesnโ€™t sound right. This is a mistake. I donโ€™t have a history of a heart condition & I donโ€™t smoke cigarettes.
#PtExp
2) You call your oncologistโ€™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

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