Arguing For Patient Data Access Amidst Provider Pushback
January 23, 2017 – When OpenNotes came onto the healthcare scene in 2011, it introduced the fairly innovative concept of allowing patients to have full access to their clinicians’ notes. Physicians questioned whether this was the right or responsible approach to interacting with patients, and in some cases, cultural barriers within individual organizations kept providers from widely adopting this strategy…
Well folks, here’s more information about Open Notes from a physician who led a city-wide initiative to get ALL the hospital systems to adopt Open Notes, nearly a decade ago, with resulting excellent patient engagement and satisfaction and improved outcomes. And then I’m also on the webinar, too! Seriously, Homer Chin MD, formerly of Kaiser Northwest, where they pioneered many aspects of Open Notes, was able to collaborate with competitor healthcare systems throughout Portland and take the entire city to Open Notes; one of the few community wide collaborations of the sort.
If you’ve not been paying attention to the growing Open Notes tsunami, well, in a nutshell, its the idea of patients viewing their doctor’s progress notes about them, online.
Listen to the HealthsystemCIO.com youtube channel recording of our 30 minute webinar:
We’ve been live on Open Notes in one form or another since our original research back in 2000, but we finally went system-wide in May 2016. None of the anticipated fears of the docs materialized in a significant way (fears of: too many phone calls, lawsuits from offended patients, volumes of complaints about pejorative terms). We found lots of benefits: patients more engaged in their care, patients more adherent to therapy, patients asking better questions (instead of “what’s my test result”, more like “I read about my results, and does it mean this or that?”).
However, not everything is straightforward; from a technology standpoint, remember to set Open Notes as “default on” with docs having to “opt out”. This will get your open notes release rate into the 95-99% range. If you allow docs to “opt in”, requiring a doc to press a button to allow a patient to view their notes, your release rates will be in the single digits. Just like Staples’ infamous EASY button, in informatics, we want to MAKE THE RIGHT THING EASY.
If any of you have not read Leading Change (maybe a blog post on this in the future), it is one of my all-time favorite and most useful books for CMIO’s. Creating a burning platform was one thing I never did well in the early days of our Patient Portal and transparency efforts. Turns out, our research and scientific data, without corroborating human stories, did not change minds and hearts. Who knew? The medical leadership at our health system did not agree to go along with this project, back in the early 2000’s.
This time (2016), I packaged Open Notes as part of our EHR system upgrade (hey, guys, turns out Epic version upgrade that’s coming on May 16, 2016 ONLY COMES WITH OPEN NOTES! Let me help you get ready for that!), obtained the leadership buy-in from our CMO’s, developed a thorough marketing plan, met in-person with key physician leaders (specifically, loud and opinionated physician leaders), enlisted patients from our Patient and Family Centered Care council, conducted a small Open Notes pilot project in 7 primary care clinics for 6 months, gathered good left-brain-appealing statistics and right-brain-appealing stories, and generally jumped in with both feet.
If you stay till the end, you might hear (an improved) rendition of Doc Prudence, my anthem to Open Notes on the ukulele.
In this incredible, short letter, a young man reminds us what outstanding healthcare is all about. Caring not only for our (sometimes critically ill) patients, but also their spouses, their families, sometimes even their cat! Don’t miss this.
This puts into perspective our efforts in Healthcare Information Technology. In my view, the world is changing quickly. Technology improves. Software improves. Regulations … well, don’t improve, they change, they increase. Someone said Change is easy, until you change something I care about. Yes.
So often, our EHR efforts are met with resistance. We are often the face of Change to our physicians and nurses. We should remember, this letter links us back to our common goal, caring for patients, easing their suffering. I recall hearing the saying, in healthcare: To cure sometimes, to relieve often, to comfort always.
Others have written about the 20 percent physician (caution: huge 100+ page pdf), and I have had my worries about IBM’s Watson or other machine learning devices coming to take my job.
In my ideal world, the perfect EHR works behind the scenes to improve quality, safety, but otherwise disappears, and allows human connection and caring. This is our aspiration. Thank you Peter DeMarco, and your wife, for reminding us of the best of ourselves.
I’m gratified that the public conversation on electronic (and also paper) medical records continues. Its a dry topic, but oh so important. Ms. Sanger-Katz writes about Casey Quinlan (and her QR code!), and the difficulty of assembling a longitudinal health record that becomes more important as we get older. The morass of privacy, mistrust, bureaucracy, swiss-cheese implementation of EHR (electronic health records) with few electronic connections, throw numerous barriers into this journey. Open Notes is just the opening salvo in trying to ease that journey.
Those who succeed in pulling together their medical records to coordinate their care are lucky indeed:
Dr. Tierney worked for years in Indiana to help the state develop a cutting-edge health information exchange, a place where most of the state’s hospitals shared patients’ medical data. After 44 years in the state, he queried the exchange for his records before leaving. He paid $100 for an inch-and-a-half-thick stack of papers.
“I went to my new doctor,” he said. “I put it on the table. And she said, fill out the form.”