I’ve shared information on validation in other posts but decided to make an infographic to make the information more accessible. Along with holding space, reaching in, and allowing folks to express themselves, validation can be a powerful way to help others and show you care.
A post on advocacy and being sick – primarily the issue of my not being able to do as much as I want and know, if circumstances were different, I could.
It really hit me again last Monday. Comments were due on new rules for interoperability (and other issues) and I was able to submit my comments but I felt they were wholly inadequate. I could not spend as much time on them as I’d like and they were far less than I wanted to say.
Interoperability: connecting technology across health care. The idea is that if your information is in one system, clinicians can access your information wherever you go – like med lists, diagnoses, allergies, and more.
Do you know how it can backfire? Has it backfired on you? Probably not.
Unicorn Care: The type of whole-person, patient-centric, trauma-informed, coordinated care that all patients seek and deserve and yet remains mostly a myth. The kind of care that seems unachievable and out of reach because of corporate greed, proprietary interests, clinician burnout, and lack of imagination. The kind of care that takes all those buzzwords listed above as well as those about innovation and disruption and makes them meaningful, not just rhetoric.
I have been seeking Unicorn Care for a very long time. And In April 2019, I found it.
Post-Hospital Syndrome (PHS) is a period of time after discharge from the hospital where patients enhanced vulnerability to disease as well as an elevated risk for adverse events, including hospital readmission, generalized dysfunction with new cognitive impairment, mobility disability, or functional decline, and even death.,
In 2013, I came across a perspective article by Dr. Harlan Krumholz in the New England Journal of Medicine entitled: Post-Hospital Syndrome – An Acquired, Transient Condition of Generalized Risk. It was the first time over years of hospitalizations that I felt that someone had finally hit on part of the hospital experience no one talked about – going home. It finally put a name to something I’ve experienced but could never put a name to – something I wanted to explain to my doctors (both inpatient and out) to help improve my care.
I wanted them to understand that while hospital stays are coded as “events” – as singular points in time with a beginning and end, distinguished “episodes” unique from ongoing care, they aren’t singular events for any patient. Our story starts long before and continues long after. And that part in between, the hospital stay itself, has long lasting effects. Post-Hospital Syndrome is one of those effects.
Not knowing whether I’d be out of the hospital in time to submit my comments, I posted an early draft this weekend. I had the opportunity to update and amend that draft and submitted my final comments just now at regulations.gov. The link below will take you to a .pdf of the comments submitted.
For those who still wish to comment, the commenting period is open until February 12 2019, at 11:59 PM ET. Submissions are accepted here.
Your comments do NOT have to be as detailed as mine. You can write general feedback on any of the areas of the RFI or answer any of the questions within to the extent you wish. I highly recommend you do submit comments, particularly on Section 2. As a reminder, I’ve written a recap of all the sections and what they’re all about here. And if you need a few tips on how to submit a comment, I’ve written a post to help you which can be found here.
I will be sure to update you when hear from HHS about the submissions received and any rules the promulgate as a result.
Thank you for all who have engaged in this process – whether you took the time simply to learn about HIPAA or were able to submit comments yourself. Your voices matter and will make a big difference in the lives of patients everywhere.
Below you’ll find my draft comments to the OCR’s Request for Information. I don’t know if I’ll be able to revise my comments before Tuesday as I’m still in the hospital but wanted to share in case anyone wanted to read them before submitting their own comments. This draft has not been edited and likely contains many grammatical errors and areas needing clarification. There are issues I’d love to add or flesh out more, but this may be all I’m able to submit. (Note: people submitting comments do NOT need to be this detailed or answer all portions of the RFI. If you want to comment generally or only answer select questions, your input is valuable.)
Comments are due on Tuesday, February 12, 2019.
If you aren’t sure how to comment, this post can walk you through it.
For background on the HIPAA RFI, see my post summarizing the issues here.