Discover and read the best of Twitter Threads about #patientadvocacy

Most recents (7)

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1/18
We at HCC are so proud of our team and participating centers. 6 abstracts of our collective work have been accepted for #ASH22. If you wish to be a part of this movement either as an individual or as a participating institution, do visit us at hemecancer.org/membership.php
2/18
#2976 Prognostic Factors and Outcomes of Adolescent and Adult Burkitt Lymphoma and Leukemia from a Low-Middle Income Country: An Experience from Hematology Cancer Consortium
ash.confex.com/ash/2022/webpr…
Read 21 tweets
1/12 Thread: Imagine sitting in a doctor's office/hospital room & being told by a random person there is nothing wrong with you. Now imagine that the person telling you this has an MD after their name. Next, consider that this is not the first time you have heard this message...
2/12 What would you be thinking? What would be going through your mind? You know how you have been feeling. You know your symptoms, your functional limitations created by those symptoms. You know how you felt and how you were functioning prior to a drastic change...
3/12 The test results you have had definitely do not say there is nothing wrong. They say something is off. It could be this or that. It most certainly is not in your head. So why would someone with MD after their name even try peddling such nonsense?
#nomoreblindtrust
Read 12 tweets
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
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
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
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
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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