Tag: opennotes

explain my notes

~ Sean Nolan

TLDR, drag this link to your bookmarks bar: explain. If you select medical-related text on any page and then click the link, it will open up an “explain” window with an AI-driven translation. Alternatively, you can just visit the site at https://explainmynotes.azurewebsites.net/.

Every day I seem to get just a little bit older. My folks too. Not a bad thing, but it does inevitably mean more time spent trying to navigate the clown show that is American Healthcare. Sometimes things are simple, and sometimes they’re little mystery dramas with House or Doc Martin trying to figure out what’s going on.

By now, most of us have gotten used to using patient portals like MyChart to keep track of our care at various providers. Lab results and clinical notes show up in near real time and — thanks to years of policy pressure — are quite comprehensive. (to wit: when I had appendicitis earlier this year, my wife at home texted me the diagnosis before anybody in the ER came to let me know what was up.)

Access to these primary sources is invaluable. But clinical notes are also full of jargon, shorthand, codes and concepts that very few of us understand. Take for example this short snippet from the surgery notes of my appendicitis visit:

I attempted to bring omentum to sit over the anastomosis, but the omentum was fairly short and there was no easy reach.

I read this shortly after coming out of anesthesia — something she tried to do didn’t work. Is that bad? Should I be concerned? Luckly, Dr. M is pretty awesome; she explained that the omentum is a layer of fat that protects organs in the abdomen, and they like to “drape” it over surgical sites to aid healing by enhancing local blood flow. Somehow despite my notable beer belly I didn’t have enough fat to make this work, but it’s not a big deal. Case closed.

Unfortunately, not every provider is a great communicator like Dr. M. And even when they are, appointments are so short and far-between that there’s rarely a good opportunity for questions like this. That’s why I wrote explain my notes.

Clinical Notes, explained by AI

explain my notes takes advantage of two pretty neat technologies: SMART on FHIR for data access and ChatGPT for helping to interpret the notes. Currently it’s set up to connect to providers using Epic MyChart. In a nutshell, it works like this:

  1. Visit the site, read the terms of use and pick your provider.
  2. Log in at the provider’s patient portal and approve the connection.
  3. Pick an encounter to see a list of associated documents.
  4. Pick a document to view its contents.
  5. Select any text in the document and choose “Explain Selection” to pop up a window that shows the original and “explained” text side by side:

And that’s it! You’ll need to authorize the app each time you use it, because Epic doesn’t permit long-lived tokens for “automatic download” patient applications. Ah well.

Caveat 1: The ChatGPT API isn’t free — if I’m surprised and the app gets a lot of direct use, I may have to figure out how to offset those costs. For now I just hope folks try it and that it’s (a) helpful and (b) inspires others to build on the idea.

Caveat 2: As I mentioned, right now this is only hooked up to Epic MyChart sites. I’m happy to add Cerner or any other EHR that folks might be interested in, it just may take a minute. Let me know if there’s a particular provider you’d like to connect with.

Accessing the data: SMART on FHIR

From here out is just nerd stuff; feel free to exit if that’s not your vibe! All of the code for explain my notes is on github.

I’ve already written a bunch about SMART and why I think it’s so valuable, so I won’t repeat myself here. But this is the first time I’ve written a SMART app for patients, and there were a few interesting nuggets worth a mention:

Standalone Launch

explain my notes uses the “standalone launch” model. With a provider app, a huge part of the benefit comes from living within the context of the EHR — it gets you single sign-on and provider/patient context and feels seamless in an environment where providers are already spending much of their day. It’s not the same for patients; a dedicated site that can explain its function and then “connect to” the portal makes good sense.

Epic Automatic Download

The super-cool thing about patient-facing apps is that you don’t need to “register” them with each individual EHR. Instead, the EHR vendors maintain provider lists and automatically enable connections when authorized by the patient. It’s hard to overestimate just how great this is — back in the day, we had to arrange to connect HealthVault to each and every provider that wanted to work with us.

Careful, though! Automatic download comes with conditions, and they are not immediately obvious (Epic’s conditions are documented behind a free login). “Refresh” tokens aren’t allowed; only certain data types can be accessed; no “write” operations are permitted, etc. My first cut at the app didn’t meet the criteria exactly, and it took me awhile to figure out what was going on.

PDF and CCDA Content

Many notes are stored as HTML or text. Encounter summaries, though, are often stored in “CCDA” format — an old-school XML standard. XML needs to be translated into HTML for display in a browser, and while there is some solid open source code for doing that, the generated HTML doesn’t always display nicely within a larger web page. I was able to tweak it for my purposes; the altered stylesheet is available per the original’s open-source license terms.

PDF content was also a challenge to display so that it both (a) looks correct and (b) makes the selection available for sending to ChatGPT. I ended up doing a server-side translation using pdftohtml, an old standby that still works surprisingly well.

Explaining notes: ChatGPT

I think it’s clear that generative AI is going to be a seriously Big Deal — combustion engine and Internet big. But it’s still very early days, and it’s hard not to be annoyed by the seemingly endless garbage “applications” being churned out by hype-riding VC-funded bros. I get that — but bear with me.

Generative AI (specifically ChatGPT for us) is pretty amazing if you think about it as your well-read, smart, eager-to-please friend without any formal training and a fear of being wrong. People like this are super-useful, because they’ve probably come across information that you haven’t, and can be great “translators” of jargon and other specialty content. You just have to take what they say with a grain of salt — a little fact-checking goes a long way.

The ChatGPT “completions” API is pretty simple — it takes an array of input/questions and returns answers in markdown format. There are a few knobs you can turn, but that’s basically it. “Prompt engineering” is a weird concept, much closer to social engineering than code. The current “setup” prompt for explain my notes is this:

You are a medical professional that explains clinical notes and other medical text using terms and language that an average American adult without medical training will understand. Minimize the use of jargon. Your responses should not be notably longer than the original text. Also please include up to three Google search links targeting the key topics you find.

The “Google search links” part here is the most interesting. I initially asked the system to return “up to five links that would be helpful for further research,” but it turns out that ChatGPT is terrible at this, and is actually known for simply making up gibberish URLs. I’m not sure why this is the case; apologists claim they’re just stale links from old training data, but it’s way more than that. Restricting the links to Google searches seems to work pretty well.

And I guess that’s it for now! Please give the app a try — good test data is hard to come by and so I’d appreciate any and all feedback or bug reports. Until next time…

Health IT: More I, less T

~ Sean Nolan

“USCDI vs. USCDI+ vs. EHI vs. HL7 FHIR US Core vs. IPA. Definitions, similarities, and differences as you understand them. Go!” —Anonymous, Twitter

I spent about a decade working in “Health Information Technology” — an industry that builds solutions for managing the flow of healthcare information. It’s a big tent that boasts one of the largest trade shows in the world and dozens of specialized venture funds. And it’s quite diverse, including electronic health records, consumer products, billing and cost management, image management, AI and analytics of every flavor you can imagine, and more. The money is huge, and the energy is huger.

Real world progress, on the other hand, is tough to come by. I’m not talking about health care generally. The tools of actual care keep rocketing forward; the rate limiter on tests and treatments seems only our ability to assess efficacy and safety fast enough. But in the HIT world, it’s mostly a lot of noise. The “best” exits are mostly acquisitions by huge insurance companies willing to try anything to squeak out a bit more margin.

That’s not to say there’s zero success. Pockets of awesome actually happen quite often, they just rarely make the jump from “promising pilot” to actual daily use at scale. There are many reasons for this, but primarily it comes down to workflow and economics. In our system today, nobody is incented to keep you well or to increase true efficiency. Providers get paid when they treat you, and insurance companies don’t know you long enough to really care about your long-term health. Crappy information management in healthcare simply isn’t a technology problem. But it’s an easy and fun hammer to keep pounding the table with. So we do.

But I’m certainly not the first genius to recognize this, and the world doesn’t need another cynical naysayer, so what am I doing here? After watching another stream of HIT technobabble clog up my Twitter feed this morning, I thought it might be helpful to call out four technologies that have actually made a real difference over the last few years. Perhaps we’ll see something in there that will help others find their way to a positive outcome. Or maybe not. Let’s give it a try.

A. Patient Portals

Everyone loves to hate on patient portals. I sure did during the time I spent trying to make HealthVault go. After all, most of us interact with at least a half dozen different providers and we’re supposed to just create accounts at all of them? And figure out which one to use when? And deal with their circa 1995 interfaces? Really?

Well, yeah. That’s pretty much how business works on the web. Businesses host websites where I can view my transaction history, pay bills, and contact customer support. A few folks might use aggregation services to create a single view of their finances or whatever, but most of us just muddle through, more-or-less happily, using a gaggle of different websites that don’t much talk to each other.

There were three big problems with patient portals a few years ago:

  1. They didn’t exist. Most providers had some third-party billing site where you could pay because, money. But that was it.
  2. When they did exist, they were hard to log into. You usually had to request an “activation code” at the front desk in person, and they rarely knew what you were talking about.
  3. When they did exist and you could log in, the staff didn’t use them. So secure messaging, for example, was pretty much a black hole.

Regulation fixed #1; time fixed #2; the pandemic fixed #3. And it turns out that patient portals today are pretty handy tools for interacting with your providers. Sure, they don’t provide a universal comprehensive view of our health. And sure, the interfaces seem to belong to a long ago era. But they’re there, they work, and they have made it demonstrably easier for us to manage care.

Takeaway: Sometimes, healthcare is more like other businesses than we care to admit.

B. Epic Community Connect & Care Everywhere

Epic is a boogeyman in the industry — an EHR juggernaut. Despite a multitude of options, fully a third of hospitals use Epic, and that percentage is much larger if you look at the biggest health systems in the country. It’s kind of insane.

It can easily cost hundreds of millions of dollars to install Epic. Institutions often have Epic consultants on site full time. And nobody loves the interface. So what is going on here? Well, mostly Epic is just really good at making life bearable for CIOs and their IT departments. They take care of everything, as long as you just keep sending them checks. They are extremely paternalistic about how their software can be used, and as upside-down as that seems, healthcare loves it. Great for Epic. Less so for providers and patients, except for two things:

“Community Connect” is an Epic program that allows customers to “sublet” seats in their Epic installation to smaller providers. Since docs are basically required to have an EHR now (thanks regulation), this ends up being a no-brainer value proposition for folks that don’t have the IT savvy (or interest) to buy and deploy something themselves. Plus it helps the original customer offset their own cost a bit.

Because providers are using the same system here, data sharing becomes the default versus the exception. It’s harder not to share! And even non-affiliated Epic users can connect by enabling “Care Everywhere,” a global network run by Epic just for Epic customers. Thanks to these two things, if you’re served by the 33%+ of the industry that uses Epic, sharing images and labs and history is just happening like magic. Today.

Takeaway: Data sharing works great in a monopoly.

C. Open Notes

OpenNotes is one of those things that gives you a bit of optimism at a time when optimism can be tough to come by. Way back in 2010, three institutions (Beth Israel in MA, Geisinger in PA, and Harberview in WA) started a long-running experiment that gave patients completely unfettered access to their medical records. All the doctor’s notes, verbatim, with virtually no exception. This was considered incredibly radical at the time: patients wouldn’t understand the notes; they’d get scared and create more work for the providers; providers fearing lawsuits would self-censor important information; you name it.

But at the end of the study, none of that bad stuff happened. Instead, patients felt more informed and greatly preferred the primary data over generic “patient education” and dumbed-down summaries. Providers reported no extra work or legal challenges. It took a long time, but this wisdom finally made it into federal regulation last year. Patients now must be granted full access to their providers’ notes in electronic form at no charge.

In the last twelve months my wife had a significant knee surgery and my mom had a major operation on her lungs. In both cases, the provider’s notes were extraordinarily useful as we worked through recovery and assessed future risk. We are so much better educated than we would otherwise have been. An order of magnitude better than ever before.

Takeaway: Information already being generated by providers can power better care.

D. Telemedicine

It’s hard to admit anything good could have come out of a global pandemic, but I’m going to try. The adoption of telemedicine as part of standard care has been simply transformational. Urgent care options like Teladoc and Doctor on Demand (I’ve used both) make simple care for infections and viruses easy and non-disruptive. For years insurance providers refused “equal pay” for this type of encounter; it seems that they’ve finally decided that it can help their own bottom line.

Just as impactful, most “regular” docs and specialists have continued to provide virtual visits as an option alongside traditional face-to-face sessions. Consistent communication between patients and providers can make all the difference, especially in chronic care management. I’ve had more and better access to my GI specialists in the last few years than ever before.

It’s only quite recently that audio and video quality have gotten good enough to make telemedicine feel like “real” medicine. Thanks for making us push the envelope, COVID.

Takeaway: Better care and efficiency don’t have to be mutually exclusive.

So there we go. There are ways to make things better with technology, but you have to work within the context of reality, and they ain’t always that sexy. We don’t need more JSON or more standards or more jargon; we need more information and thoughtful integration. Just keep swimming!