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.

Author: CT Lin

CMIO, UCHealth (Colorado); Professor, University of Colorado School of Medicine

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