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.

EHR v Covid-19: MDPOA (power of attorney) & Advance Care Plans and the Covid BUMP

Full open-access paper here. https://preprints.jmir.org/preprint/21385/accepted

What I love about working in an academic health center is the luxury of being surrounded by people smarter, and more hardworking than I am. Here are Drs. Portz and Lum analyzing our data on the capture of patient’s Advance Care Plans – ACPs (including the Medical Durable Power of Attorney MDPOA) and other documents online via our patient portal.

We believe we are among the first in the country to offer the ability for patients to complete this online and designate a medical decision-maker in the event of their incapacity. Furthermore, we now accept photos of documents (easy and convenient via our patient portal app integrated with a smartphone camera — hooray modern tools for modern medicine) into the patient chart, and can see signatures, names, contact information, and details of MDPOAs, Living Wills and other ACPs.

And, during the anxieties of the pandemic, we had a significant uptick in patients completing the MDPOA and uploading images.

CMIO’s take? Another publication for our smart colleagues — good. Better patient care — great.

EHR v Covid-19. Nurses help families of ICU patients, from home

ICU rounds at PVH, photo credit: Lydia Baldwin

These are our healthcare heroes at work: From ICU rounds at Poudre Valley Hospital, part of UCHealth: Starting from the left standing we have Respiratory Therapy, Palliative Care PA, and Chaplain. Sitting from the left are RN, intensivist MD and Charge RN. In front of the intensivist (in green scrubs) is a telephone on the desk. The telephone is on ‘speaker’ and dialed in to a conference line. Also dialed in are: Pharmacist working remotely, Nurse Communication Liaison working remotely, Social Work.

So many great things going on here: Social distancing as much as practical (too much further and you can’t hear each other over the din of electronic alerts across the ICU), N95 masks (all day every day), reviewing data together from so many disciplines, discussing each patient in detail and taking immediate actions (placing orders, creating consensus on medical decisions, dividing tasks for rapid action).

In times of pandemic, the hospital follows infection prevention protocol and isolates very sick, very infectious patients. In this case, we have grouped and isolated all Covid-19 patients into a distinct unit, away from non-Covid patients. AND, in most cases, patients are not allowed to have visitors.

This is both good medical practice, and heartbreaking to families who cannot be present at a patient’s most desperate hour.

Out of this swirl of confusion, Julie Griffin, Nurse Manager of Care Management, thought: we have highly qualified nurses on-leave at home (orthopedic unit nurses with no post-op surgical patients; pregnant nurses for whom Covid infection would be particularly dangerous); how might they help share the burden of patient care with bedside nurses, and still minimize risk of contagion and exposure?

And so was born: Nurse Communication Liaison. Nurses from home, helping keep families connected, and reducing the burden on bedside nurses. We haven nurses helping with med/surg units as well as ICU’s. As described by ICU nurse Molly:

7AM: My day starts at 7: I review the Epic EHR chart from home for patients in the ICU. I read the notes from the nurses and the doctors overnight in our 12 bed unit. By the way, our unit has moved to double occupancy, and we’ve expanded to be a 23 bed unit. So much has changed, we’re so much busier.

8-10AM: I start receiving calls from family members and I give them updates on their loved ones, that I can, based on what I know. I am using Epic secure chat (a HIPAA-compliant text message service) to communicate with the ICU bedside nurses, social worker, respiratory therapy to get and give updates. I LOVE secure chat because it means the bedside nurse: who is gowned, gloved, doesn’t have to scrub out to answer another nuisance phone call interruption; they can catch up with chat-messages when there’s a break in the action.

10-11AM: Daily ICU rounds (picture above), where the team discusses every patient and I’m on the conference phone. It is a complete team with everyone pitching in.

11AM-430PM: We have designated ONE main contact family member for each ICU patient. We have found it can be overwhelming to have many family members calling each day for updates. I am so happy to be able to serve as the main contact for these family members and unburden our extremely busy bedside nurses to focus on their patients.

Some great unexpected moments:

Jamie: “Bedside nurses often spend 15 minutes on the phone with family. Multiply that by 5 patients and it becomes a big part of your day. We all wish we had more time to talk to families, but we’re often too busy caring for patients. I love helping connect with families and reassuring them.”

Jamie: “One gentleman was was not doing well. He was very quiet on the phone, and would never ask for anything. I spoke with his close friend at home, who noted that he was Jewish, and might appreciate a visit from a Rabbi or the Chaplain. I was able to arrange that.”

Jamie: “Being an ortho nurse on a medical unit, I was anxious at first. But communicating with the bedside nurses by secure chat and occasionally the phone, I found that even if I couldn’t answer families’ questions, I could always find out. Families are always so appreciative of the extra communication. I love this role. It is really awesome.”

Dawn: “The difference with this role is: There’s only the person on the phone. It is quiet at my home on my end. Normally when I’m at the bedside, I’m always trying to ‘wrap up the conversation’ with family: there are so many other things needing my attention. I can really feel good about being focused, connecting with family, and freeing up the bedside nurse to do their jobs.”

Dawn: “I was on the phone with the husband of a Covid patient. I noticed he would occasionally grunt, while we were talking about his wife. I had to ask him: ‘Are you okay?’ He told me he had had a fall, and had to pull on his pant-legs to go up the stairs. I recognized the signs of a major injury. It took some convincing, but I finally got him to call his doctor. Turns out the next day he was admitted and had emergency surgery himself.” As an ortho nurse, she was probably the perfect person to help.

Davida: “Sometimes you can remind the bedside nurse by secure chat: ‘his daughter would like to see his face today. Can you get the tablet in there for a Zoom visit?'”

Davida: “I feel really useful, being able to connect with PT, social work, bedside nurse all by non-interruptive but efficient Secure Chat, and then calling to make sure the family stays informed.”

Molly: “It is completely weird not to be an ICU bedside nurse right now. I think I will be better at charting in the future. Not being able to see the patient lets me understand what families want to know, that I rarely wrote down before: how do they look? are they following commands? can they squeeze? How scary this is for the family, and although it is a tricky role for us, it feels great to be helping.”

CMIO’s take? Thank you to our amazing UCHealth nurses: Lisa Claypool, Julie Griffin, Jamie Deschler, Davida Landgraf, Molly Carrell, Dawn Velandra for their experiences and stories.

COVID Incident Command: a day-in-the-life

The author, defended by his creature creations.

A recapitulation of a series of tweets about my recent experience at the UCHealth’s command center. I rotate the responsibility for the physician support position with about a half-dozen other docs. The command center has been up for almost 3 weeks now.

1/ A day @uchealth Incident Command Center. Constant stream of calls. Room is full of experts (infectious diseases, pulmonary, disaster) with a dozen other directors. Like being the frontal cortex of a massive organism…

2/ If you’ve never served in a Command Center, it is scary as heck, and also exhilarating. Things happen and decisions are made in minutes and hours, not weeks and months, as is more usual in a large organization… is that

3/ Sample incoming call: ‘ICU wants to know whether to send a second COVID test nasal swab on a patient whose test was negative yesterday but the team has high suspicion they have COVID.’ (Yes, not via nasal swab, but by tracheal aspirate for better sampling)

4/ Sample call: ‘Community organization purchased 10 COVID tests somewhere; would we send a medical assistant to perform swabs on their employees.’ (No, test performs poorly for patients with no symptoms.’ and, how do you choose who to swab? And, what would you do differently if you have a result? negative: stay home. Positive: stay home(!)

5/ Sample call: ‘Hey, if ventilators are scarce, we could build Iron Lungs faster: want some?’ (After internal discussion, no: COVID is associated with ARDS (adult respiratory distress syndrome). ARDS causes stiff lungs, unlike polio, and even then they didn’t work well), AND, how to manage IVs and catheters?

6/ Our converted conference room now is 24/7 staffed with executives, directors, nurses, doctors, staff who connect to every part of our 12-hospital, 600 clinic, 4000 provider system. Kinda like a neocortex…

7/ We sit and take calls from all over the system, clarifying the daily-changing policy, delivering nimble responses to moment-to-moment events in our EDs, our clinics, our hospital wards …

8/ We huddle in purposeful groups through the day: medical officers, informaticists, nurse leadership, respiratory therapists, ICU teams, hospitalists, data analysts, facility managers, tent-building teams(!) …

9/ We ‘run the board’ twice a day to ensure our top issues are addressed, re-prioritized, to keep our eye on the ball: racing ahead of the coming tsunami of COVID-infected patients collapsing on our doorstep…

10/ We marshal our supplies, build negative pressure rooms, re-allocate staff, negotiate new partnerships, create and dissolve projects to solve immediate problems…

11/ Dramatically expand our Virtual Health Center for Virtual Urgent Care, expand our nurse call line to handle COVID concern calls, go from 2700 virtual visits last year to 3000 virtual visits per DAY this week…

12/ Discover new trends: hypoxic COVID patients who are surprisingly not short of breath, patients who oxygenate better laying on their stomachs, how poorly bleach wipes interact with electronics(!) …

13/ We tearfully celebrate improvement: today a cluster of patients successfully extubated from the vent, a few patients de-cannulated from ECMO, a hallway of nurses applauding an ECMO survivor…

14/ And yet we have fun… Jurassic organisms battle for supremacy while modern organisms do the same.

15/ Our loyal administrative intern asked our Incident Commander at the end of her day shift: ‘How do you feel? How do you think we’re doing?’ …

16/ Her reply: ‘For the world, terrible. For our country, very worried. Here, we have prepped well, we have a great team, we forecast constantly, and we are going to meet this challenge.’ So proud of her, and us.

Unified Theory of Design Thinking for Social Systems (thanks to d_school at Stanford)

I recently attended a 6-day course Designing for Social Systems at the Hasso Plattner d_school at Stanford University. We sent at team from our Wellness initiative at the University of Colorado Department of Medicine, cutely named “WellDOM” (more on this in a future post). It was … a mind blower.

What is design thinking and why is it so cool?

  • It is a system of thinking that both expands and focuses creative thought.
  • It encourages curiosity and diving into the ethnography of individuals
  • It also encourages thinking about positive and negative influences at many levels of social systems
  • It actively encourages play, physical manipulation of prototypes and sticky notes to build a joint vision
  • It uses storytelling, rapid cycle development, ‘what if’ and ‘how might we’ statements to spark ideas.
  • It is FUN.

I’ve been thinking and digesting what I learned over the past few months and came up with the graphic above. I’m a visual thinker, and although it is quite cluttered, I think it finally encapsulates the scope of what I now appreciate to be Design Thinking for Social Systems:

  • It is Human-Centered (focused on emotion, story, experience), the inner yellow circle
  • It is Systems-Aware (complex social systems impact your success), the outer blue circle
  • It is Strategy-Focused (keep your end-goals in mind)
  • The inner and outer circles interact, and the strategy lane underlies the whole group of activities.
  • There are perhaps 4 dozen specific activities that allow you dive deeply into every part of this diagram, in your pursuit of a creative, lateral-thinking solution to complex, ambiguous problems.

Don’t wait! Take one of these courses! And start applying it today!

CMIO’s take? Creativity, and NOT Computing Horsepower, is the next frontier.

Pharmacogenomics (PGx) at UCHealth, getting serious about Personalized Medicine (published article)

Thanks to Pharmacogenomics Journal at Future Medicine

https://www.futuremedicine.com/doi/10.2217/pgs-2020-0007

Thanks to Christine Aquilante, lead author and main force of nature behind our early experience with Pharmacogenomics. Pharmacogenomics is the specifc branch of Genomics and Personalized Medicine that deals purely with “drug-gene pairs” or how a patients genetic variants might affect their ability to process and metabolize medication. The upshot is: some patients don’t respond well to some medications. There are now several dozen drug-gene pairs well described in the literature, where patients won’t respond well to certain medications because of their genomic variant. However up until now, it has been difficult to get any knowledge of such variants in front of the patient and prescriber at the most important time: when deciding on a new prescription.

UCHealth has a Biobank where we have obtained research lab samples from over 100,000 patients (drawing an extra lab tube in the course of routine clinical care) and have been testing samples for pharmacogenomic markers. In a few cases, we have found clinically relevant genetic variants that we are beginning to deliver back into the Electronic Health Record in the form of test results for clinician, in the form of test results and notification to the patient in the patient portal, and finally and most importantly, to the prescriber of the affected drug AT THE TIME OF PRESCRIBING for any affected patient.

This is groundbreaking, and hard work on so many levels:

  • Have to educate providers about pharmacogenomics: something that most did not learn in school
  • Have to educate patients on complexities of homozygous, heterozygous, population risks and multiple gene variants, balancing transparency with unintended alarm
  • Have to figure out when/how to alert prescribers at just the right time, for exactly the right population so that we don’t overstep what the science tells us is true in the research. In other words, don’t alert ALL patients with the genetic risk and a particular prescription if 99% of them will NOT ultimately have a problem with that prescription.
  • Lots of other things to think through (we just spent an hour just starting the conversation on our next drug-gene pairing)

CMIO’s take? We are happy to be among the few organizations setting up, and scaling up our efforts on Biobanking: conducting research AND benefiting patients in clinical care with PGx. Here we are expanding the boundaries of medical knowledge, and turning around to translate this into better decision making for our providers and patients.

The EHR fights Hepatitis A outbreak!

From UChealth.org

https://www-uchealth-org.cdn.ampproject.org/c/s/www.uchealth.org/today/hepatitis-a-outbreak-colorado/?amp

Always excited to see awesome work from smart, altruistic colleagues. Our own Kelly Bookman, Senior Medical Director, Emergency Department and physician informaticist, helped develop and deploy a Clinical Decision Support alert in our Electronic Health Record, in conjunction with Michelle Barron, infectious disease specialist and Infection Control director, among other analysts and experts.

With a major outbreak across the country, including the regions we serve at UCHealth, the team built an alert for Emergency department docs, scouring patient charts for those who are at increased risk for Hep A, and reminding docs to prescribe the vaccine during the course of their ER visit, regardless of original reason for the visit. This resulted in hundreds of additional vaccinations to protect our most vulnerable patients.

When patients can’t afford it, UCHealth covers the cost.

Finally, our team shared our design and code with other hospital systems in our region, to protect more patients.

CMIO’s take? THIS is what the EHR does well. I’m grateful to awesome colleagues, and hopeful about our future.

Zoom! Powers of 10 IRL! How about a zoomable EHR?

From Science News

https://www.eso.org/public/images/eso1242a/zoomable/

Click the hyperlink (not the image) above. This is a ZOOMABLE 9 billion pixel image with 84 million stars (thanks to Seth Godin’s blog for the link). Thanks to the European Southern Observatory for hosting this image.

Makes you think about our relative place in the universe. I’ve been fascinated with the night sky and have followed our exploits in astronomy, the Hubble, etc. BUT! to have a single image where you can click and zoom in (or shift click to zoom out) gives you a sense of the truly massive scale of our universe.

This reminds me of the movie we watched in elementary school: “The Powers of 10” from 1977 (see it here). What I did NOT know is that Morgan Freeman narrates a NEW version of the Powers of 10 that includes more modern discoveries (here!).

CMIO’s take? Humbling to say the least. How often do we get our nose off the grindstone and look up? And then to have such a depth of data and an amazing tool to zoom in and out of our place in the universe? Would that our EHR could do that as well… Hmm….