“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:
- They didn’t exist. Most providers had some third-party billing site where you could pay because, money. But that was it.
- 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.
- 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.
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!