It’s 2021, so why does it feel like my medical history is still recorded like its 1921?

Among the weeds that line the forest that is our totally broken healthcare system here in the US, lies a hidden danger, a thorn if you will, that I recently got stuck on. That little sting of a cut the thorn makes in your leg has the potential to get infected and become the root of more serious problems, but feels like it should be easily avoidable, if given the right attention.

The problem I so horribly allude to via metaphor here is that of fragmented medical records. A concept as basic as data storage in today’s digital age surely should have been addressed decades ago, but alas, as I went to see a new primary care doctor last week, I found myself 45 min into the conversation rummaging through the depths of my brain for any medical conditions I had when I was 12, and trying to recall the name of that random medicine I’m allergic to. Complete and thorough medical histories, records, and the treatment plans that accompany those should not be relying on my terrible memory to provide contextualized care – I literally can’t even remember what I had for breakfast. There’s gotta be a better way to store and share medical records across systems, doctors, and orgs – so in practice, why was my experience so poor?

Let me preface this by saying that last week, I saw @profkane and @llamadelmar chatting about the fact that they both have done some work around EMRs (electronic medical records), and I’d like to generate some engagement around this topic – not trying to claim I know any more than they do, simply trying to build off of the idea!

The way I understand it (via https://www.nextgen.com/insights/emr-vs-ehr/emr-vs-ehr), you have EMRs as an in-office digitalized version of a patient’s chart. These are a great start, but they aren’t often able to be shared. EHRs, or electronic health records, in contrast, are a holistic look at a patient’s medical records over time, across doctors, locations, specialists, hospitals, etc. THIS is what I think is so critical to cohesive medical care, and where I see a gap in my own experience. I’ve heard a bit about these before, and had the impression that they exist but there are security issues around them and that’s part of why they aren’t universally shared. But I didn’t know anything for certain, so I did some research as to why EHRs aren’t consistent across provider networks:

  1. EHRs do exist, but people are skeptical of them: When I went to start my research, is started typing in “Why are EHRs….” And the second most searched choice was “Why are EHRs bad?” so naturally I followed the rabbithole, and it turns out, lots of folks have serious concerns over electronic records – thousands of deaths or serious health issues due to improper treatment have been chalked up to incorrect, poor functioning, or otherwise improper use of EHRs. The 2019 KHN article explores the failures of the $36b spend from the US government to make medical records faster, safer, and easier to access, but “Rather than an electronic ecosystem of information, the nation’s thousands of EHRs largely remain a sprawling, disconnected patchwork. Moreover, the effort has handcuffed health providers to technology they mostly can’t stand and has enriched and empowered the $13-billion-a-year industry that sells it.” Most industry solutions have “Gag clauses” that prevent customers from sharing concerns about their software. As a result, buyers like hospital systems continue purchasing the same bad products that don’t connect to other systems, require mountains of upkeep in terms of manual data entry, and otherwise fail to address the core goal behind EHRs.
  2. Relatedly, an NIH study explores the risks around user error, technology design flaw, and security/privacy breaches.
  3. Another deep dive by NCBI/NIH sites aversion to the EMR system because, “it has undermined personalized face-to-face patient care and the vital doctor-patient interaction – the very soul of medicine – into a new check box-based doctor-computer-patient interaction.” This is something I experienced in my initial visit with my new primary care doc: every question asked was so that he could type something into a text field, who knows if he truly “listened” or internalized what I was saying – I hadn’t connected these dots until reading this article. The study goes on to estimate that 50 percent of providers’ workdays are spent on-screen, and the increased work burden is one of the factors for physician burnout.

While shockingly, after a little research, I have not solved this EHR problem, I would like to pose a few ideas/questions to the class:

  1. Can we use blockchain to securely store health record data so as to combat that barrier to universal EHRs? If there’s only one private key, I have the ability to share my info, locked by my private key, with any doctor or practice, and they can store data on the same unified chain accordingly.
  2. Could we share info more easily if all records were required to be stored on cloud platforms like AWS or GCS rather than on legacy systems inside of hospital’s own data centers?
  3. As Prof Kane’s book alludes to on pg 66, how might EHRs be augmented or fundamentally changed by things like AI to help fill fields and propose treatments, and could that expedite adoption?
  4. Should this be a larger conversation under the umbrella of having a public universal healthcare system? If it’s all government run, it’s all under one system, all connected, all secured the same way, not at the will of private for-profit healthcare IT, insurance, and hospital systems – then we can share info with all providers safely.

In any regard, I’m frustrated by the reliance on my memory to recall any health care visit or problem I’ve had my whole life, and I’ll be curious to hear others chime in….

Jake

4 comments

  1. I want to show my support for and also express my visceral feelings in favor of everything you’ve written. My brother is a Doctor for one and I’ve had to hear about this for years. I’ve advocated for help in the medical field for a long time, and now with blockchain and some big tech companies paving the path towards securing private and confidential information, this should be a no brainer. I think the government wants this to wait out until they test features with licenses, passports, credit cards, etc. The one thing I can say confidently is that it’s not far.

  2. Your blog had me searching the Canadian Health Care system (I grew up in Toronto). I thought be cause there is universal health care in Canada – everyone is issued a health card with a unique number. I would have thought through this unique number it would be easy for records to be available in one nationwide source, however, it is not. But maybe that’s one way we could do it. I am also taking a global healthcare systems course and heard about how Israel was able to get Pfizer shots quickly and it was good for Pfizer to give them shots first because Israel’s medical system is very good about data collection and hence is quick on analysis. Maybe we model whatever Israel is doing. I think its tough without universal healthcare though.

  3. Hello Jake,
    I know we chatted quickly last week about this topic and glad you started the deep dive into electronic health records. My background is in healthcare administration and I have experienced working with health systems that have more than one software to track patient records – imagine a well established health care system using such old technology to track someone’s record that you have to use commands rather than ‘click and go’ to shuffle through patients with the same last name! And just like your initial research, that’s just the tip of the iceberg of what’s wrong with how medical information is being stored today.
    I think your second point of building up cloud based platforms to share information is the right direction and where many electronic health record companies are trending. Some things do come to mind here though is what do we do with all that information in legacy systems? Are there data extraction and conversion companies that specialize in this movement of information, and most importantly, is the cost of that data being moved worth the expense?

  4. I think the answer to all of your questions is “yes.” I particularly think the one about blockchain is a winner. I think the problem is that the medical industry was WAY behind in the early 2000s and tried to modernize. The problem is that the rules, regulations, and companies that developed them were also in the early 2000s and have done little to keep up with advances in technology. I could have a long conversation on this topic!

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