UPDATED FOR INFO BLOCKING rule: UCHealth’s 16 year OpenNotes Journey (and a ukulele song)

Since the passage of the 21st Century Cures act and the INFORMATION BLOCKING rule, I’ve gotten a ton of questions about our experience with Open Notes and Open Results. AND A UKULELE SONG

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Image courtesy of Healthcare Informatics

OCTOBER 2020 UPDATE. 

In this update:

  1. A ukulele song on Open Notes! What?! Read to the end…
  2. Our current interpretation of INFO BLOCKING rules and our current plans
  3. Links to important tip sheets that you can use/share

Since the passage of the 21st Century Cures act and the INFORMATION BLOCKING rule, I’ve gotten a ton of questions about our experience with Open Notes. Followers of this blog the Undiscovered Country will have heard this before. However, if you’re new here, welcome! I’m updating my original post from 2017. This now will include:

Important Links

  1. Link to my post on INFORMATION BLOCKING and the 1-page WHY plus 4-page HOW/WHAT that we are circulating at our Health System, affecting 6000 docs.
  2. Link to my post on HOW TO WRITE AN OPEN NOTE, with language suggestions.

UCHealth’s INFO BLOCKING settings

FYI, in regards to INFO BLOCKING, there are tons of nuanced decisions healthcare organizations are making, since the 1200 page rule still leaves some specifics quite vague, and the often-rumored FAQ that will clear up some of the vagueness is not here yet (less than 30 days until rule takes effect!). Here are our (interim) decisions at UCHealth:

  • All outpatient, emergency dept, urgent care provider progress notes will release immediately upon signature to the patient (already doing this)
  • All clinical notes associated with those visits (MA, RN, technologist) notes will also release immediately
  • All hospital progress notes will release to patients upon signature. This will include: H/P, daily progress notes, consult notes, operative reports, discharge summaries.
  • All medical student notes that are cosigned by physicians and used for billing will be immediately released. We are in discussions about the remainder of medical student notes that are NOT part of the legal medical record.
  • All resident and fellow notes will release immediate upon attending signature
  • All nursing and clinical notes that can be considered progress notes will release upon signature
  • NO psychotherapy notes will release to patient (they are not stored in our EHR)
  • NO notes that may be involved in legal, criminal or similar proceedings
  • NO notes that may ruin research randomization if revealed to patients
  • SOME of our psychiatry provider progress notes already release to our patients. Three of our 8 psychiatry clinics committed to Open Notes in 2017 and have had no issues. We are still working through this, in discussions to release more behavioral health progress notes (psychiatry, psychology, social work, case manager, others) to patients. There are some concerns about the possibility of risk to staff for patients reading some of these notes in real-time. Stay tuned!
  • All progress notes, inpatient and outpatient have a “DO NOT SHARE” button where providers can individually opt a note out of sharing with patient if it is deemed a risk. Our share rate is typically in the 90% range.
  • We already release all lab results immediately to patients, including sexually transmitted diseases, hepatitis B and C, etc.
  • HIV is on a 7 day delay and will move to immediate
  • We already release all plain film radiology and ultrasounds immediatelly.
  • Complex radiology: CT/MRI/PET are moving to immediate
  • Pathology, Cytology is moving to immediate.
  • We plan to manually release a handful of genetic tests, including Huntington’s disease only AFTER discussion with the patient. The remainder are moving to immediate release.
  • We have over 850,000 patients on our patient portal, so these settings will affect a great many patients.

Our 16 year journey to Open Notes

Thanks to @RajivLeventhal of Healthcare Informatics for a nice write up of our Open Notes work at UCHealth. The journey to “overnight success” can sometimes take a decade or so. To paraphrase Machiavelli: “Nothing is so difficult as Change in a large organization, as your proponents are, at best, lukewarm, and your detractors have ALL THE PASSION IN THE WORLD.” I discuss some of my hard-won lessons in Change Management on the journey to OpenNotes.

Link to story (March 16, 2017):
UCHealth’s OpenNotes Journey: From a Few Docs to Enterprise-Wide Acceptance

Original Research in 2001

The original research on SPPARO (System Providing Patients Access to Records Online, conducted in 2001, 10 years before the official, and better-named Open Notes initiative) is still available:

Ross, Lin, et al. Providing a Web-based Online Medical Record with Electronic Communication Capabilities to Patients With Congestive Heart Failure: Randomized Trial. J Med Internet Res. 2004 Apr-Jun; 6(2): e12.

Earnest, Lin, et al. Use of a patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. J Am Med Inform Assoc. 2004 Sep-Oct;11(5):410-7. Epub 2004 Jun 7.

And … a song!

A ukulele song on Open Notes: Doc Prudence.

CMIO’s take? It has been a long time coming. Information Transparency for patients is the RIGHT THING to do. For myself, it was a 16 year journey from our first research studies, completed in 2001, until system-wide adoption of Open Notes for clinics, emergency depts and hospital discharge summaries in 2016. For others it is hitting them all at once here in 2020. It is a better place we are going to. In the meantime there is a lot of work and culture adjustment until we get there. Good luck to all of us.

The Centaur in Healthcare: AI and humans (WIRED)

from WIRED magazine article

https://www.wired.com/story/algorithm-doesnt-replace-doctors-makes-them-better/

In the battle between the future of super-intelligent Artificial Intelligence and the paltry skills of increasingly left-behind human brains, some rays of hope. There are a growing number of projects dedicated to combining the skills of AI and humans to perform better than either alone.

The WIRED article above discusses Dermatology AI and how it improves the performance of physicians in detecting skin cancer. However, it mainly improves resident and primary care physician performance, and not expert dermatologists.

Is this good? Bad?

And, what is a Centaur? A horse-human hybrid from greek mythology.

I think this illustrates Arther C Clarke’s (paraphrased) saying:

Any teacher physician who can be replaced by a machine should be.

This is not necessarily a bad thing. Consider: if we can allow AI to be trained to augment physicians or advance practice providers in every case where the providers’ experience is not expert-level, we could raise the standard of healthcare throughout the country, or the world.

AI’s still can’t hold a hand, counsel patients on complex and competing issues, be compassionate, and create human connection.

We already have our computers helping remind us of the mundane yet critical tasks of doing the right thing for out patients: remembering tetanus and pneumonia vaccines, remembering to screen patients for colon and cervical cancer, remembering to repeat diabetes exams at frequent intervals. Why not allow them to give a second opinion on whether a skin mole is likely to be malignant?

CMIO’s take? More like this please. The co-evolution of AI and human is accelerating. We are finding a way forward.

Access to Telemedicine and disparities (WIRED)

from WIRED magazine article

https://www.wired.com/story/access-telemedicine-is-hardest-those-who-need-it-most/

As we work on telehealth options for patients, it is important to keep in mind the population of patients we serve. This article demonstrates the differences in access our most vulnerable patients have in accessing technology.

We cannot rest. We have miles to go, before we sleep.

Czernik: Counter-intuitive way to connect with the patient (Annals Internal Med)

My awesome colleague Zuzanna Czernick and collaborators have written a brilliant piece about the EHR. She used a CT scan image with a large pulmonary abscess to get the attention of an otherwise hostile, disengaged hospital patient.

Link to article Annals of Internal Medicine : https://annals.org/aim/fullarticle/2738161

My awesome colleague Zuzanna Czernick and collaborators have written a brilliant piece about the EHR. She used a CT scan image with a large pulmonary abscess to get the attention of an otherwise hostile, disengaged hospital patient.

The EHR, although widely disparaged, is also a wonderful tool to bring medical data alive for the patient. She offers a few guidelines on how to most effectively create the trusted “triangle” of provider-patient-computer:

  • Prepare
  • Setup
  • Educate
  • Chart together
  • Review

There are so many opportunities to connect with our patients; why not bring up a screen to show an image, a result, a graph, a note written by a consultant that illustrates and answers a question.

CMIO’s take? Yes, we need counter-intuitive (and soon perhaps simply intuitive) stories about the benefits of a modern information system in caring for patients. Thanks, Dr. Czernik!

Ghost Kitchens and their meaning

image from the NYTimes article

https://www.newyorker.com/news/letter-from-silicon-valley/our-ghost-kitchen-future

This is a great thinking piece from the New York Times. A ghost kitchen is a trailer set up in a parking lot, with chefs cooking dishes from restaurants, sometimes from 3-4 different restaurants. This can result in serving meals in the parking lot, or setting up for local delivery AS IF delivered from the main restaurant. This solves the problem of underemployed chefs at restaurants with inadequate social distancing seating, or restaurants that have had to remain closed for some reason.

Observations:

  • Placing ghost kitchens in parking lots leverages old spaces
  • Ghost kitchens emphasize hyperlocal location
  • Ghost kitchens are thriving during the pandemic
  • Ghost kitchens leverage internet tools: apps, A/B testing, analytics, and allows nimble innovation, recombination, creativity, disruption

Read the article, and come back here to think with me. What could healthcare learn from Ghost Kitchens? We are already seeing the beginning of disruption in healthcare: the use of telehealth visits with patients has increased the flexibility of patients and providers by removing geography as a constraint (in some cases). What could A/B testing, or analytics do to further serve our patients in a high-quality, personalized, lower cost way?

CMIO’s take? Sometimes, you have to look outside your usual work-sphere to get the best ideas. Sometimes you have to be willing to disrupt yourself before someone else gets there first.

Doomscrolling. Are you guilty of it? (nytimes)

image from the NYtimes article

https://www.wired.com/story/stop-doomscrolling

Here is a new term for you: Doomscrolling. I am guilty of this, until I become aware of it and have to wrench myself away. It is a like car-crash in slow motion and you want to know how this horror story ends.

CMIO’s take? STOP. Turn it off, go live your life, and talk about
THREE good things.

EHR v Covid-19. Pandemic mask history

https://www.ctvnews.ca/health/coronavirus/a-history-of-pandemic-masks-why-doctors-wore-beaks-during-the-plague-1.4890564

I did NOT know that these beaked masks were full of theriac, a mixture of 55 herbs, intended to cleanse the air before the plague doctor breathed in.

AND that plague doctors carried long rods to maintain distance from others. I wonder where I can order MY “social distancing rod.” Can’t find one on Amazon, although this might do.

The article is fascinating. I’ll take a break from EHR pontification today.

UCHealth v Covid-19. The second surge (not what you think)

Mind the Brain Logo

https://medschool.cuanschutz.edu/psychiatry/about/in-the-news/psychiatry-news/mind-the-brain-mental-health-in-the-time-of-covid-19

I’m so proud to be part of a multi-disciplinary, talented group of clinicians. Our Department of Psychiatry is gearing up for what may become the second surge of our pandemic, as we relax the stay-at-home orders in Colorado:

Mental Illness. Depression. PTSD. Panic. Suicide.

These terms must no longer carry the stigma they do. There is no shame in reaching out for help. Appropriate and timely treatment can aid a person’s innate resilience and return him or her to health.

We have not experienced a pandemic of this scope for more than a century … We are psychologically inexperienced.

C. Neill Epperson MD

Read more of Dr. Epperson’s ideas and initiatives in this fight for mental health and the major investments UCHealth will be committing to improve the well-being of all residents of the State of Colorado. Welcome to the fight!