I vividly remember the call. Rather the text. Rather the beep. Yes, it was a beep.
I was a pediatric resident back in the 1990s, and my beeper went off directing me to call an extension with which I was not familiar. (You see, back in the day, residents could generally tell you the four- or five-digit extensions for most of the hospital’s units because we sadly saw them so often that we inadvertently memorized them.)
Could this be our Utilization Director asking me why a certain patient hadn’t been discharged yet? Or more worrisome, was this my Residency Coordinator with a concern from an attending about my rotation last month?
No, it wasn’t anything like that. It was medical records directing me to “come downstairs and help a parent with their child’s chart.”
Like many pediatricians, I did my residency at a children’s hospital. And like most hospitals, the medical records department was downstairs — it seems it didn’t matter from where you started; you always had to go downstairs. I wasn’t sure what was required to help a parent with their child’s chart, but since I was used to being told what to do, I complied and went downstairs. There, I found a familiar face: the father of a patient currently on my floor. His daughter had multiple medical problems, hence many of the residents knew her as she unfortunately was frequently admitted. She was an inpatient now with another exacerbation of her disease.
Her dad wasn’t upset, but he wanted to learn more about treatments she had received during her last admission at the hospital. As the father of a minor patient, he had full rights to see the chart (keep in mind, “the chart” was completely handwritten but had computer-printed lab and imaging results as well).
I learned from the clerk that if a parent walked down to medical records and asked to see the chart, their request was immediately granted, but … the parent couldn’t just peruse on their own. They needed a guide, if you would. That’s where I came in. I was to sit there with the parent and answer any questions about the plentiful abbreviations and poor penmanship. I was there to tell the parent that “no SOB” was a good thing, while “↑K” was probably not such a good thing.
I’m not sure if policies such as this still exist; somehow, I doubt it. We’ve come a long way in the last three decades when it comes to paternalism in healthcare. There is still a role for clinicians in interpreting medical minutiae, of course. But today, patients (and their guardians) have the ability to see the raw data and notes themselves, and they can draw their own conclusions, often with the help of Dr. Google or various apps.
Most physicians think this is a good thing — most of the time. You should be able to see your test results when finalized. It should be easy for you to read what your doctor wrote about you. Yet there are valid exceptions. Should someone learn they have cancer from their online patient portal? Probably not. There is a line that shouldn’t be crossed, but where exactly to place that line?
The federal government recently released rules surrounding the 21st Century Cures Act. This is an enormous piece of legislation, dealing with such issues as health insurance and mental health parity, NIH innovation projects, and a clarification of HIPAA privacy requirements. One huge change that this act brings is new federal instructions around what personal health information must be shared with patients. Section 4004 is entitled “Information Blocking,” and this nascent phrase will soon become commonplace in the halls of hospital departments such as information technology, health information management, compliance, legal, and quality and performance to name a few.
In a nutshell, the feds have mandated that a core collection of data points and information must be readily released to patients via approved electronic formats starting later this year. The U.S. Core Data for Interoperability v1 (USCDI) includes records such as allergies, clinical notes, and lab results.
What’s new about this? Haven’t patients had access to their charts for decades by simply going to the doctor’s office or hospital and asking to see their data?
Yes, this has been allowed for a very long time, but soon, in accordance with federal mandates, it will be much easier to get the data. No need for a trip to a medical facility; just pick up your mobile phone, log into your favorite healthcare app, and view away. And if the few dozen elements of the USCDI aren’t enough for you, worry not. Within a few years, the majority of electronic health information (EHI) must be shared via the same approved formats.
There are valid reasons that a doctor or healthcare institution can withhold chart data and still not be labeled an information blocker. For example, there may be information in medical notes that can’t be shared with a patient as it may harm the patient. Further, there may be privacy protections that trump the need to disclose EHI (e.g., what if several patients’ information is co-mingled in a single note?). There are eight reasons (technically, they’re called exceptions) outlined in the rules that permit the non-sharing of EHI, but they are purposefully narrowly written and require thoughtful contemplation before being invoked.
If you’re involved in any aspect of healthcare, expect to be hearing and learning much more about information blocking in the coming months. I anticipate a plethora of online webinars are in most physicians’ futures. And if we’re ever allowed to meet in person again, I predict many a cold, stale Danish pastry will be “enjoyed” while listening to exhilarating talks titled something along the lines of “Information Blocking 101: What you need to know in 173 slides.”
In fact, you can start by attending our our Aug. 11 webinar, Information Blocking: How to prepare your organization.