Because we laid all the groundwork and also felt it to be the RIGHT THING FOR PATIENTS, we went ahead and launched our changes in November, and SURPRISE: I still have a job, wasn’t fired. Thanks to our MMOLC sharing community.
A brief reminder
The rule stipulates that patients should be able to receive a copy of
Test Results (laboratory, pathology, radiology) and
Their Provider’s (physicians and advanced practice providers) Progress Notes
upon request. The interpretation was that if a patient had a Patient Portal account in the EHR (electronic health record) of the clinic or health system, this meant immediate release of this information. This is a major change for many health systems who had not yet adopted Open Notes (release of progress notes) or delayed the release of test results by several days.
Since our adoption of Immediate Release
of Progress Notes and Test Results since November of 2020, I have had exactly 2 complaints reach my desk, both from oncologists representing unhappy patients who read their CT imaging study on Friday evening and had difficulty reaching their doc until Monday. This is in the setting of about 1 million clinic visits, 800,000 radiology studies, 30,000 hospital stays, millions of lab and pathology results in these last 4 months.
So, not perfect, but not nearly the “sky is falling” result, as anticipated by many colleagues.
In case you’re still working through this, here are some documents (some updated) that we used. Some are actually named Information SHARING instead of BLOCKING, just a more hopeful attitude. I hope these might help you. Images here, links to full PDFs further down.
Even better, our colleagues at OpenNotes.org are doing some terrific office hours with experts online where you can hear the real-life experience of leaders ALREADY doing this work in various fields, successfully.
CMIO’s take? Are you ready? Do you have documents YOU can share? Lets do this!
As of November 2, 70 primary care practices went live with Our Notes. Read more about OurNotes here. Dr. Tom Delbanco and Jan Walker, researchers at Beth Israel Deaconess initiated and ran the study.
In brief, it is a way for patients, just ahead of an upcoming appointment to tell their provider what has happened to them since their last visit: changes in medication, new or changing symptoms, life changes. And then to ask up to 3 questions they’d like to discuss with their provider at the visit.
These notes were then automatically inserted into the providers’ progress notes. They could then be cited in their entirety, with no action needed by the provider while composing the rest of their progress note. Or, the provider could edit for clarity before signing the note. In this way, both patient and provider contribute the data from that visit, improving communication and collaboration.
We were so successful from our pilot test, conducted in coordination with Beth Israel Deaconess Medical Center (BIDMC), in our one primary care clinic, we have now launched it for ALL primary care clinics throughout UCHealth.
Our early findings showed that over 90% of providers (physicians and APP’s: advance practice providers) responding to surveys viewed OurNotes positively and wanted to continue, as did over 90% of patients who participated.
Not all patients who have a patient-portal account respond to the OurNotes questionnaire ahead of their visit. Those who do not, have a regular visit, just like before. About 15-20% of patients who have an appointment respond send an OurNote, and providers are using the notes regularly.
And now, CMS’s latest regulation on Information Blocking, part of the 21st Century CURES act, has detailed stipulations on what must be released to patients, including Open Notes in clinic, in the emergency department, and for inpatient notes. It turns physician paternalism on its head: we should RELEASE all information to patients UNLESS there is a compelling reason not to.
If your organization is NOT scrambling to get this in front of your providers to discuss: immediate release of progress notes, consult notes, history/physicals, operative reports, discharge summaries, laboratory report narratives, radiology report narratives, pathology report narratives, THEN YOU ARE BEHIND THE EIGHT BALL.
Full disclosure, I was part of a Robert Wood Johnson sponsored event to explain Open Notes to congressional leaders in Washington DC 2 years ago. Little did I know we’d end up here, with the regulations not only catching up to the literature (benefits of Open Notes in ambulatory settings), but surpassing it and requiring Open Notes (patients ability to access their providers notes written about them and their are) for Inpatient Settings. We published our experience with Inpatient Open Notes in 2013. The results: lukewarm. Our providers and nurses were very concerned before the project, somewhat less concerned after. Our patients were underwhelmed with the offer of viewing their notes. Others have written about inpatient Open Notes, that potential challenges with communication, anxiety and increased workload may negate the benefits. Specifically patients and providers were concerned: will providers STOP writing important discussions and debates in progress notes because of fear that the patient or their family will immediately see them (eg: “there are several possible cancer diagnoses we are considering that might cause this”, OR, “be careful when you go in that room, the father can be very aggressive”). Certainly, with more care and thoughtfulness, we can write better notes, but should we require that? Are hospital providers not already working too-long shifts and already burned out from excessive administrative work? I’m uncertain.
I am concerned that MANDATING release of inpatient daily progress notes immediately to the patient may result in significant unintended consequences, with benefits that may not overcome the risks.
But, here we are. The full details and FAQ of Information Blocking (how soon must notes/results be released? how extensively? Retroactive to ALL notes written electronically (for us, back to 2003)? are still pending, and yet the regulation goes into effect in November. 2020. Soon.
We have had rules for built-in time delays to the release of test results to patients that have been in place since 2003. These applied to both outpatients and inpatients. We have been pleased that our release of blood tests to patients has been “immediately” since 2003. However, we do delay complex radiology imaging (CT, MRI, PET) for 7 days and pathology results for 14 days so that potential cancer diagnoses are communicated from the provider rather than “discovered” online.
This will now have to change, and urgently. I am convinced we can get to IMMEDIATE release of all results and notes, but it will take some hard thinking, some hard cultural conversations, some letting-go of old traditions, some problem-solving of potential new problems, lots of anticipatory planning (how to educate patients on what they might be the first to see online), and also (as per the Leading Change principles) to grieve the loss of the “old ways.”
IS THIS THE END OF SECRECY IN HEALTHCARE?
So, this is the slide deck content for the talk I gave at CHIME (College of Healthcare Information Management Executives) last fall, and at a couple of other national venues, detailing the information transparency efforts we are undertaking at UCHealth:
Well, it is time to update my resume. It has been a year, I have failed at more things. I’ve read more failure resumes, and I like some of the newer ideas, for example, listing your NON-skills. I’ve added mine.
For fun, I’ve set my Zoom background with an actual vintage 1997 photo I took of the medical records room in the basement of University of Colorado Hospital on Ninth Avenue in Denver (back when giants walked the earth). This aisle featured 6 stacked rows of medical record charts AND piles of paper record folders ON TOP since we were out of room (not shown). This was one of 29 aisles of records in the Records Room, holding ONLY the latest 3 years of records: the rest were retained (for 27 years) in a downtown warehouse.
We turned down lots of innovation partnerships and offers of free services because the medical information locked in those paper records was too difficult to pull out:
We have a Pulmonary Function mobile van parked out front: send us all your patients who currently smoke and we will screen their lung function for free!
Hey, our insurance company will pay you a bonus payment if you can prove all of the patients who have had a previous heart attack are taking aspirin! (true story, a clinic trying to prove this using paper medical records and clerical staff paid more gathering the data than they received in bonus money)
Quick: the mobile mammogram bus is coming next week: let’s call all our patients who are due for mammography screening!
We have a new diabetes educator visiting for a couple weeks! Can we contact all our patients with diabetes to come for a free visit?
Uh, oh! The medication Bextra is being recalled by the manufacturer; quick: call all our patients taking that medication! (True story: 1/2 of our clinics were able to run a report on our EHR at the time and call affected patients immediately; the other half, still relying on paper records, had to say… “well, when the patient calls for a prescription refill in a few months, THEN we’ll tell them…”)
Fortunately, it is simple in our current EHR to run ad-hoc reports to do all this now. Whew! And, we can do predictive analytics on this data to save lives that would have blown my mind back then.
Here’s another flashback:
THIS is the Medical Records intake room, back when we were ONE hospital, 40 clinics (we’re now 12 hospitals, 800 clinics). On average, 6 vertical feet of paper, received EVERY DAY. Fifty medical records staff, filing, sorting, pulling, sending, receiving, creating new charts. And, still, we were 2 WEEKS behind on filing.
We had over 20 transcription services, all local, receiving tiny tape-recorder dictaphone tapes, transported by COURIER from the doctors dictating. As an aside, some of us remember hearing doctors mumbling their ultra-fast, only partly understandable dictations walking the halls between patients. On average, outpatient transcriptions took about 2 weeks to complete and print out, mail, and file back into the record. Inpatient daily transcriptions were ordered STAT for 3x the cost and typed same day, arrived by urgent courier in the late evening and taped into the paper chart.
I am proud of my doctor handwriting
For the record, here’s a paper progress note I wrote in 1999 on “non-carbon paper” sending the original copy to Hospital Medical Records, and then keeping the yellow copy in a “shadow chart”: a duplicate set of medical records kept in our “off-site clinic” because … we could not count on Hospital Medical Records to pull the relevant charts for clinic patients scheduled each day.
Don’t even get me started on our appointment scheduling system. “Oh yes, thanks for calling! So you’re looking for Dr. Lin’s next available appointment? Sorry, nothing for the next 3 weeks. Oh, you’d like to see the next available doctor? =sigh= OK I’ll pull down the other twelve 3-ring binders, one for each doctor, and see who might have an open spot.”
Are you keeping track? 50 medical records staff at the hospital to maintain Main Medical Records, and 1-2 additional medical records staff at EVERY clinic (about 40 clinics) to keep a shadow chart. Because we don’t trust each other to keep track and deliver records on time!
Oh, and meet this guy. In 1997, our medical information (see: x-ray films, paper medical records, dictaphone tapes) moved at the speed of rush-hour traffic on Colfax Avenue. Seven miles each way, 12 leased buildings throughout metro Denver. Two round trips every day.
With all this person-power and effort, the result? On a typical clinic day, I would see about 18 internal medicine patients. Main medical records would successfully deliver charts for about 9 patients. Our clinic’s shadow chart system would deliver charts to my exam room for about 6 additional patients, leaving, on average THREE patients with NO CHART. Just a piece of non-carbon paper, with handwritten vital signs and a list of patient-reported allergies that day. Mind you, there was no such thing as a clinical computer system at the time. As a result:
“Hi Doc! It is great to see you! What did my cardiologist tell you about me when he saw me 2 weeks ago and did all those tests? He said that I should come talk to you about his report.”
“Um. I don’t have any of your records today. I see your blood pressure looks good and that you report no allergies to medicines though.”
“What?! I made this appointment to go over his report! That visit was 2 weeks ago!”
“Yes. Um. What condition, exactly, do you have? Why did we send you to my cardiology colleague? What do you remember that he told YOU? Can you help me out here?”
“This is disappointing. You mean you really have nothing on me? Do you at least have the blood test results or the echo result?”
“Um, no. I’m really sorry about this. Okay, tell you what, no charge for today, my apologies for wasting your time and I will call you later this week after I call and yell at my medical records people and maybe get your chart and see what it says.”
“Whatever. You guys should really get your act together. Okay, can you at leastgo ahead and refill those 3 medicines that you prescribed for me from last year? I’m about out.”
(Excitedly taking out prescription pad) “Sure, I’m happy to! Do you happen to remember the names of the medications and the doses and what they’re for?”
Records in the trunk
Let’s not even talk about loading up a 2-foot-tall stack of medical records in our arms, walking out to the car, throwing them in the trunk, driving home and dictating late into the night, and hopefully remembering to bring them back into the office the next day. Oh, the pre-HIPAA days…
And, if there was an urgent need for a particular medical record? We would routinely have a couple staff members wandering the clinic, from office to office, desk to desk asking: “Do you have the chart for Peterson, Mary, or Smith, Joseph, or Samuels, Jane?” and thus not answering the phone, or rooming patients…
Tap tap tap
Of course, by contrast, with our current EHR, tap-tap-tap: instant access to any patient record.
Yesterday, for example, my patient met her oncologist to discuss a new diagnosis of metastatic cancer. Today, I was able to read her consulting note, review the pathology from a recent biopsy, refresh my education about peritoneal carcinomatosis in an EHR-linked online textbook, secure-chat and then phone call with the oncologist about prognosis and treatment options, set up a video visit with the patient and her family, and have a have a well-informed, thoughtful conversation about her next steps.
This speed and coordination would not have been possible in the era of paper charts.
Not as cool as Jimmy Fallon’s Thank you Notes
Wait! One more thing! Remember the good old days when we received faxed blood test results and then had to notify patients by writing a STACK of folded post cards? I faced a stack of these EVERY EVENING at the end of clinic. Please don’t ask me how many times a patient brought back a post card saying: “Um, this looks pretty important, but, I think you meant to send this to a different Peter Smith. I haven’t had a blood test in awhile.”
Our patient Portal, we call My Health Connection: we release test results to the patient online, and then send comments with our interpretations, arriving to the patient’s inbox instantly. Comment from my patient? “It feels like I have my doctor in my pocket. So cool.”
CMIO’s take? All y’all don’t know how good you have it.
On the other hand, are you old, like me? Do you remember those days?
On the third hand, in another decade, I hope folks will look back to TODAY and marvel how much better the future is.
I’ve been thinking about giving talks backed by powerpoints. Leaving aside the many talks on “Death by Powerpoint”, the lifeblood of the industry is on slides-man-ship in presenting new ideas to our own organization’s leadership, and at national meetings.
And then you see these lovely presentations by TED speakers who are inspiring, tell great stories, but DO NOT have to provide detailed scientific rigor underneath their high-flying narratives.
We, in informatics, have to contend with both parts of this conundrum: how to tell a compelling story well enough to capture imaginations, and more importantly, purse-strings, and yet back it with enough data and science to be compelling to our very picky bean-counters and scientists.
Further complicating this fact is that often, our powerpoints get distributed by email and have to STAND ALONE to convince others, sometimes. Therefore, the whole TED TALK, with IMAGES ONLY and NO DATA become useless in this context; now we have to figure out EITHER how to write an entire white paper (1-4 page brief that can be read quickly) to supplement any slides we give, or to modify these slides so that they CAN stand alone. Ideally, we can write a powerpoint slide deck that includes enough detail to satisfy data-hounds, and yet engaging enough, with a minimum of words, to create a compelling narrative.
CMIO’s take? Only you can judge if I’ve achieved my goals (see link). This is a summarization of more than a decade of my ‘doing it wrong’ and set of guiding principles that I’ve used to continually improve my own talks. I already presume that you know how to build a Powerpoint deck, and that you’ve read other articles on How-To in powerpoint, maybe Garr Reynolds’ Presentation Zen, or Dan Roam’s Show and Tell. There’s lots out there. But this is my take.
Are you a PIGlet? Someone interested in the field of medical informatics? One of our newest informaticists coined the term PIGlet (Physician Informatics Group member). Cute. Increasingly I’m meeting with medical students, medical residents and now physicians as well as allied health persons (nurses, physical therapists) interested in the field, and unsure how to get started. Well…
Fallacy: informatics is about designing computer screens and talking with vendors about features and screen design.
Fallacy: informatics is about going into a dark room, creating a fantastic tool and launching it into the public and collecting all the acclaim from co-workers who instantly understand why you are requiring more clicks and typing to complete your amazing new software package.
Fallacy: informatics is about being smarter than everyone else and just KNOWING that your solution you cooked up in your head is going to work for everyone IF ONLY THEY DID THINGS THE RIGHT WAY, like you.
Instead: informatics is about creating a vision of what healthcare COULD BE, empowered with knowledge. This is a team sport. It is about collaboration: collecting everyone’s best ideas, developing consensus, trying a bunch of things in small batches, seeing what works, and then making a big bet, measuring outcomes, and diving back in for the next cycle of improvement. Done well, Informatics is Design Thinking and Teamwork, and the “information technology” is just how it is implemented. This is completely the opposite of what many think informatics is.
They’re … wrong.
Here are some ideas for getting started. A fair number of these are associated with a TED talk or other online video summaries.
Read about informatics (but ONLY after reading about leadership and organizational change)
Lorenzi, Riley, Managing Technological Change
Journal of the American Medical Informatics Association
The Design of Everyday Things (Norman), others
The Glass Cage (Carr)
Books to read (leadership, culture change, a book club if you’re lucky)
Above all, be curious, be useful, pace yourself, take care of yourself so that when opportunities arise, you can occasionally sprint into action. Create learning habits to stay abreast of changes that affect your clinical practice and that of your colleagues. Read broadly about other industries unrelated to your own, and how problems are solved elsewhere.
CMIO’s take? Informatics has become a crucial part of medical training. The most commonly used (and often hated) tool for physicians today is the EHR; more common than the Yankauer, the retractor, the scalpel, the stethoscope, even. Why not develop exceptional skills with this tool? Until it matures into a self-aware entity (! a later post), it is on US to shape it into a useful tool.
OK, nobody has time to read an actual book, so here is William Ury speaking at Creative Mornings about his book. Do you have 30 minutes to be a better person? Ever seen the arm-wrestle exercise? Watch the video.
I’ve read his book several times now. At least put it on your bookshelf. My take-aways for me and my colleagues and my work. We discussed this in our Large PIG book club recently.
Separate people from the problem. Personality is NOT at issue. Avoid blame on either side
Focus on interests, not positions. Be curious. See (and demonstrate your understanding of) the other party’s position clearly
Learn to manage emotions. Allow expression of strong emotions. Else, may block clear thinking
Escape the cycle of action and reaction. Instead, explore interests, invent options for mutual gain, leverage differences, brainstorm jointly as “wizards” (lower level persons who are permitted to work on ideas without leadership pressure)
Prepare your BATNA (Best Alternative To Negotiated Agreement) What will you do if you don’t agree?
Seek a third party who is trusted by both sides
Be SOFT on the people (care about the person), HARD on the problem (principled thinking)
I’ve read authors with similar points: -Steven Covey: Listen first to understand, THEN speak to be understood -Crucial Conversations: Make it safe to converse, Control your own stories, Contribute to shared pool of meaning, Ask other’s interpretations, Be tentative in your theories, Seek win-win opportunities.
CMIO’s take? This is a foundational book for Informatics and leadership in general. Find time to learn these lessons. Find the win-win.
I gave a keynote speech late last year at Technology Awareness Day, hosted by the University of Colorado, Anschutz Medical Campus about Big Data, Tech acceleration, and Artificial Intelligence, as applied to healthcare.
I enjoy making my colleagues uncomfortable. How long will doctors have jobs? Will the AI eliminate internal medicine doctors? If Watson can beat humans at Jeopardy, can it beat me at reading medical literature? Can it be dermatologists at diagnosing skin cancer? Can it beat radiologists at interpreting CT scan images?
It is true that the most complex object known to us is the human brain, with its trillions of neurons and extensive interconnections. From this physical matter, something called “general adaptive intelligence” and “consciousness” arises, neither of which we understand or know how to construct or deconstruct. On the other hand, fundamentally though, isn’t a neuron a collection of physical and chemical processes that we DO understand? And then extrapolating upward then, is it not conceivable that we could eventually figure out how to construct a human brain in all its complexity? Hmm.
Reading books like “Life 3.0” and “Superintelligence” gets me thinking about stuff like this. It is both humbling and exciting at the same time.
CMIO’s take? Decide for yourself. I know, it is almost an hour long, and who has an hour anymore, especially if TED speakers can get their point across in 10 minutes? Well, consider my talk a series of 4-5 TED talks. Yeah, that’s it.
Congratulations to Amber Sieja, Katie Markley, Jon Pell, Christine Gonzalez, Brian Redig, Patrick Kneeland, co-authors on our published article in Mayo Clinic Proceedings this week. I’ve spoken of some of the details on this blog, so I’ll let the paper speak for itself. Nice to be recognized! Coming soon: a video by Dr. Sieja explaining some of the highlights of the paper.