Cait DesRoches, DrPH

I've been thinking about leaving Twitter for a while now. I find it draining, and I'm too busy to put in the effort that it requires. The oligarch taking over was the final straw. You can always contact me at opennotes.org/contact/

OpenNotes puts patient agency at the center of our work. Denying patients the basic human right to make their own care decisions is fundamentally at odds with our movement. Healthcare decisions belong in the hands of patients and the people who care for them.

@HealthPrivacy @SavageLucia @MightyCasey @ONC_HealthIT @CoherenceMed @DrSimpsonHSR @BraveBosom @GraceCordovano @SterlingHIT @theERIKABrown @MsWZ @USGAO @HealthIT_Policy Wow - honestly I understand why they would pass on me, but you - that's just stupid.

@cmd418 @SavageLucia @MightyCasey @ONC_HealthIT @CoherenceMed @DrSimpsonHSR @BraveBosom @GraceCordovano @SterlingHIT @theERIKABrown @MsWZ @USGAO @HealthIT_Policy Ditto.

DEAR @ONC_HealthIT You paternalistic s**tbags You seriously could not find ONE woman for #HITAC? SERIOUSLY?? I repeat: you paternalistic s**tbags. cc @CoherenceMed @HealthPrivacy @SavageLucia @DrSimpsonHSR @BraveBosom @GraceCordovano @SterlingHIT @theERIKABrown @MsWZ

@SavageLucia @MightyCasey @ONC_HealthIT @CoherenceMed @HealthPrivacy @DrSimpsonHSR @BraveBosom @GraceCordovano @SterlingHIT @theERIKABrown @MsWZ @USGAO I did apply but wasn’t selected. Whatever the reason for the all male selection, it’s not a great look @HealthIT_Policy

@MightyCasey @ONC_HealthIT @CoherenceMed @HealthPrivacy @DrSimpsonHSR @BraveBosom @GraceCordovano @SterlingHIT @theERIKABrown @MsWZ Just remember everyone, these are @USGAO appointments. @ONC_HealthIT has no influence. Also, one had to apply. If you don't like the output, get your Representative to send a letter to the head of @USGAO explaining why.

@TheLizArmy @LisaDTRice @brianclaymd @rfberry It does expire for kids but I don't think it does for adults. the patient has to revoke it. #hapc

@LisaDTRice @brianclaymd @rfberry Great question! No, I don't think proxy access to the patient portal ever expires until the patient revokes it. @brianclaymd or @cmd418: Have you heard anything about this? #hapc

Hello and welcome to the #hapc Tweet Chat where we discuss topics related to palliative care and hospice. Today we’ll be chatting about engaging older adults and family caregivers/partners through shared access to electronic health records.

@NotesOnNursing 100% Health care orgs/providers should WANT us to be actively using the portal. We need the information to do our jobs and help them do theirs. #hapc

@cmd418 We need to support families when they support pts - make it easy in the #EHR and across healthcare #hapc

T2 I wonder how a portal confirms pt permission for shared access when the pt has cognitive impairment - how easy is access? #hapc

@GeriLynn @NotesOnNursing Yes. pts can revoke access. Probably good practice to review the proxy settings every once in a while #hapc

@brianclaymd @rfberry Hi Brian! I also think vendors should consider adding privacy controls for adult patients. Esp as more information comes online because of the info blocking rule. Pts might want to grant access to only some parts of the record. #hapc

@rfberry Big need for #EHR vendors to develop capabilities to better parse protected teen info from the rest to still allow a robust proxy portal experience #hapc

@TheLizArmy @NotesOnNursing I know! it does feel wrong but it beats phone tag - or never getting a call back. #hapc

@NotesOnNursing I have recently had this experience as well! It feels so creepy logging in to the portal as my uncle who is facing dementia. But it's the only way I can get his doctor to respond to me... #hapc

T1 I help my 83 yo mother with meds, appts, etc… and there isn’t a way for me to access her #EHR unless I pretend I’m her. That’s awful. No regard for her safety or my sanity. #hapc

@rfberry I use the portal for myself and have shared access for my daughter (although it's limited because she's a teenager) and for my aunt (I'm her primary caregiver). It's very helpful for helping her manage her care. #hapc

T1 What is your familiarity and experience with online patient portals? Have you ever created a patient portal account for yourself? Why or why not? #hapc

@KathyKastner It a "learned out of necessity" skill but it comes in handy when you live in an old house!

I am in awe, Cait DesRoches OpenNotes. "Fun fact about me is that I'm good at hanging drywall. #hapc

@rfberry Cait DesRoches here from OpenNotes. Fun fact about me is that I'm good at hanging drywall. #hapc

Please take the next few minutes to introduce yourself, where you’re Tweeting from, as well as a fun fact about yourself you don’t think most people on this #hapc chat know about you.

💻WEBINAR: Thursday, April 15 Presenters will bring to life lessons learned from implementing #opennotes in safety net settings. Learn from: - Dr. Anshu Abhat @AnshuAbhat of @LACHealthSrvs - The team at @forFamilyHealth in NYC Register: register.gotowebinar.com/register/88688… #healthequity

@TheLizArmy @chethanr @Doctor_V Okay - maybe I have a little bit of FOMO

@cmd418 @chethanr @Doctor_V Bryan was quoting you! And Amanda delivered the best comments of the night!

Happening now!

@myopennotes @sethb_md @Seth_MD Amazing!! I love this!

@sethb_md Way to go, @seth_md’s mom!

My mom just called me to discuss the doctor’s note she just read thanks to the 21st Century Cures Act!! Thanks to @myopennotes for paving the way

@chethanr @atulbutte @theNAMedicine

@atulbutte @theNAMedicine Horcruxes

Got an idea on how to extend the human life-span? A 2-page application is all it takes to be considered for an award worth $50K, from @theNAMedicine! Open to applicants from any background! buff.ly/2R7Xwnr

Today is the day! A new U.S. federal rule will ensure easy access to patient health information. cambiahealthfoundation.org/stories/new-us… h/t @CambiaHealthFdn by @cmd418 @crblease @TheLizArmy #opennotes #CuresRule

This is so disappointing - worked on this issue years ago - sad to see it rearing its head again in my own backyard. tinyurl.com/3ppyddyp