Enlightening Results 💡 Profile picture
Jan 9, 2023 9 tweets 5 min read Read on X
#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. 🚀
3) Ability to strategically operationalize when you have
✅chronic illness
✅life-altering, life-limiting condition
#RareDisease
#disability
makes all the difference in
👉outcomes
👉#PatientSafety
👉care coordination
👉costs
👉access to community supports
👉access to research
4) 🚨All patients should have the right to chose when they see/read/receive results and these conversations should be happening proactively at point of care PRIOR to results hitting the portal.
5) 🚨 All patients should be equipped with tools, technology, and tech-enabled human touch to understand the power of their records.
6) Life with a diagnosis doesn't abide by business hours. Patient access to their health information can't be restricted to business hours or only when a doctor will see you.
7) Access to OUR health information can mean the difference between life and death.

Access helps US do the work we need to do to get the care we need when there isn't a doctor or nurse in sight.

Access helps US hack the fragmentation that is US health care.
8) Our Right of Access needs to be better supported, not continually lobbied against.
9) Thanks to @_BenLeonard_ @politico for not shying away from what's become an unnecessarily polarized subject and for taking the time to consider the patient and carepartner perspective in his latest piece

politico.com/news/2023/01/0…

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More from @GraceCordovano

Mar 6, 2023
#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
3) Patients are buried in:
👉 piles of paperwork
👉 fragmented, manual, poorly coordinated workflows
👉 massive losses of time in waiting and navigating uncharted, unsupported care journeys
👉suffering

#PtExp #Healthcare #UnblockHealth
Read 12 tweets
Feb 3, 2022
🧵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.
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
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.
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:

👉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 👇👇

#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
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.

“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

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