ONC @ 20: A Tale of Optimism and Humility

Hey class, it's time to jump in the Wayback Machine. In this case, I literally had to use the Internet Archive's Wayback Machine to rummage for this post's content in honor of ONC's 20^th anniversary.

In late 2005, when I was still at the start of my ONC career, the office formed its first federal advisory committee, the American Health Information Community (AHIC). Brimming with optimism and a vision for a health IT-enabled future, the AHIC considered three initial "breakthrough" areas focused on: consumer empowerment, health improvement, and public health protection.

A breakthrough was considered "the use of health information technology that produces a tangible and specific value to the health care consumer and that can be realized within a 2-3-year period." I can now say with a high degree of professional experience (aka humility) that systemic improvements in health care within two or three years is no small feat. While we have seen it happen, it just isn't the norm.

For this post, I thought it would be fun, inspiring, and insightful to look back at these "breakthroughs" to see if we actually did "break on through" (for The Doors fans out there) and how the 2024 version of myself views them.

Consumer Empowerment

This category highlighted four areas for improvement: the first two being a personal health record and medication history. Thanks in large part to government and industry efforts over the past 20 years, the vast majority of patients can securely access their health information over the internet (via a patient portal or smartphone app), access key pieces of their data like allergies, medications, and clinical notes (which are all now part of the common set of data represented by the United States Core Data for Interoperability (USCDI), and caregivers can similarly access and manage these accounts for kids and older adults.

We are also getting better at (though still a lot of room for improvement) enabling individuals to collect all of their information in one place. Making "individual access services" at nationwide network scale through the Trusted Exchange Framework and Common Agreement (TEFCA) is a big step toward improving this experience. Recognizing over the long term that for most patients, health information winds up being scattered in various locations, this breakthrough category also envisioned that efficient health record location services would exist. Guess what!? They do! While we still have work to do on digital identities in health care and patient matching can always be enhanced, records can be located today at nationwide scale.

The last area called out in this category, registration information, focused on cutting down on patients repeatedly filling out check-in forms. As noted by AHIC, "[a] single electronic health registration will make it easier for individuals to give their information and for clinicians to use it. Additionally, the consumer could update the information once and share it with all providers immediately as needed." While the process (for some) has moved electronic (e.g., prefilling forms via your patient portal or a clinician's intake website), the paperless "no more clipboard" publish and subscribe dream has not yet come true. BUT I HAVE HOPE! The QR-code-ification of our economy is making its way into health care, from insurance IDs to vaccination information. The SMART Health Cards (and Health Links) standards approach paired with USCDI data has the potential to usher in a new era of progress in this area. If we can use our smartphones and QR codes to pay at checkout, order food, and board airplanes, surely, we can use a standardized QR codes for health care check-ins (pretty please…let's make this happen).

Health Improvement

This category tackled a wide spectrum of use cases, including: electronic health record (EHR) adoption, electronic prescribing, quality monitoring and reporting, chronic disease monitoring, childhood immunization record, and employee empowerment.

Let's start with the big movers: EHR adoption and e-prescribing. Acts of Congress, namely MIPPA (2008)[1] and the HITECH Act (2009)[2], established incentives that significantly impacted the adoption curve. The e-prescribing breakthrough from AHIC said "[h]andwriting for prescriptions will be a thing of the past and patients will not have to wait at the pharmacy or shuttle back and forth when there is a prescribing problem." As the narrator to this here story, I'm going to go with pretty darn close on the handwriting bit and the mileage varies (pun intended) when there's a prescription issue.

We stopped formally tracking e-prescribing as it started to be found everywhere in the mid-2010s, but the EHR adoption numbers show that around 2016 almost all hospitals and more than 75 percent of office-based physicians had adopted EHRs. This change in health care was a remarkable accomplishment that truly represents a national effort.

With respect to quality monitoring and reporting, the theme here is slow and steady. Looking back, I think this use case felt like we'd jump from the Flintstones to the Jetsons (I'm betting our readership is following the references). We've made good progress in standards, semi-automating aspects of reporting, and reducing (paper) chart abstraction. We've also made strides in measure specifications, computability, and terminology use consistency. However, with more digital data at more clinical locations, the complexity of our (collective) measurement interests have grown as well. And that growth in scope and scale has created friction with how quickly workflows and clinical practice can change. But there's reason to be hopeful. The transition to FHIR (and Bulk FHIR) that's underway shows promise in unlocking additional change that we've long desired, including the further linkage between quality and decision support and more nimble, technical ways to query for populations (also still a work in progress but getting better!)

When it comes to chronic disease monitoring, childhood immunization records, and employee empowerment tools, good progress and a range of innovative solutions emerged over the past two decades. Remember, these AHIC breakthroughs were conceived before the iPhone, so the era of wearables, internet of things, remote monitoring, and other mobile applications that have now become our norm fit into the "wouldn't it be amazing if…?" category. As a parent, I can tell you over a decade ago the struggle was real when it came to digital access to my kids' immunizations. Now, not so much. I have successfully accessed my kids' immunizations through their portals and linked them to me as a parent in my state's immunization registry (kid to parent attribution matching for the win!). But, as easy as it is now compared to 2005, it's due in large part to meaningful use, standards advancement, and real, hard work by our public health colleagues at CDC, states, and more, that this specific area has digitized quite well. The pressures of the COVID-19 pandemic certainly made awareness of and interest in accessing electronic immunization information more mainstream, too.

Public Health Protection

This breakthrough category was meant to focus on "allow[ing] for monitoring and management of public health threats that result from episodic or unexpected events that affect whole populations" and it highlighted use cases such as: emergency information network, biosurveillance and pandemic surveillance, and adverse drug event reporting and notification.

We've hit the home stretch of our Wayback Machine and this last category hits home. To reorient folks to this time period, we'd just witnessed and responded to a major public health event in wake of Hurricane Katrina. This reinforced the public policy aspiration for a nationwide network for health information exchange; one that offered resiliency to the health care sector and the ability to support continuity of care for individuals (displaced or otherwise) even in the face of some type of disaster. And so began ONC's (and your) journey toward health information exchange at a nationwide scale. Leading up to TEFCA's go-live at the end of 2023, there was a lot of investment, infrastructure, and sweat-equity by both the public and private sectors. ONC and other federal agencies invested in early prototypes and trial implementations, states leveraged their own and HITECH funds to stand-up state and regional networks for their residents (yes, they were CHINs, then RHIOs, then HIEs, briefly HIOs, and now HINs - that's health IT for you.). And, private sector groups helped invest and usher in networks that could operate at nationwide scale. Overall, we have made significant progress and yet at the same time, it feels sometimes like we're just at the beginning of where we'd hoped we'd be (that's health care for you). Lots to be proud of, but also still lots to do - so finish reading this and get back to work!

"While a major public health event has not occurred in the United States for decades, the threat of a broad natural or man-made health threat remains a possibility," said AHIC. As you know, dear reader, we checked that box with COVID-19; but even leading up to the recent pandemic, we had jolts with Ebola and Zika. Indeed, the AHIC was not the first to note the promise for our nation's health infrastructure to be in a state of digital readiness, but its points ring true. The pandemic mobilized a lot of substantive action and modernization efforts at all levels of the health care system, and it's important for these to continue and for us to prepare for the future.

Last, but certainly not least, adverse drug event reporting and notification. Again, timing and a little bit of what I like to call "HITstory" is important here. In 1999 the Institute of Medicine's To Err Is Human was published and in 2004, Vioxx was withdrawn from the market after concerns over its safety and potential to increase the risk of cardiovascular disease. These two (among many other reports and events) represented a call to action for the informatics community and a powerful foundation on which to build the case that EHR adoption and use could help inform drug safety policy and pharmacovigilance overall. If we consider the computational power (including decision support and enhanced workflows) as well as the digitized medication lists (and medication allergy lists) we have today, we have much more depth and breadth in our socio-technical systems to detect and prevent adverse drug events. While medication errors still occur and new issues have been introduced by the use of health IT, we can do more to improve drug safety with the combined efforts of health professionals and health IT than we ever could on paper.

It's hard to imagine what another 20 years has in store, but I'm looking forward to it. Thank you to everyone that's shared this journey with ONC, to our current ONC staff, and to the hundreds of ONC alumni that are out there now keeping our mission alive.

[1] Medicare Improvements for Patients and Providers Act of 2008

[2] Health Information Technology for Economic and Clinical Health Act of 2009

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