HDG #022: Health Data Utilities (HDUs)—what they are and why you should care
Read time: 5 minutes
Greetings Gurus! This week, we’re exploring a new evolution happening as we live in an age of health data—oodles and oodles of it, in fact. In healthcare, this data can be a lifesaver, literally, if and only if it is shared, brought together meaningfully and consistently, and actually used. And many of you know I’ve been a long-standing advocate of Health Information Exchanges (HIEs) for this reason.
With the Civitas Networks for Health (a national collaborative of HIEs)’s Annual Conference just around the corner, I’ve been seeing a lot of buzz about the newest evolution for HIEs: becoming a Health Data Utility (HDU). The concept has intrigued me for some time, so that is what we’re exploring today.
I shouldn’t have to, but just in case: what are HIEs?
Remember all the buzz about HIEs? They serve as middlemen for medical information, establishing secure networks for health data exchange between healthcare providers, regardless of the Electronic Health Record (EHR) systems they use. Established in large part due to the 2009 HITECH Act, HIEs, often non-profits, partner with local organizations to develop governance and technical frameworks, and according to a 2018 study, up to 80% of hospitals are on board.
For example, the eHealth Exchange network boasts 61 regional or state HIEs, connecting major public healthcare programs like the VA health system. They allow clinicians to access timely patient health data, improving care quality and reducing unnecessary hospital admissions and readmissions.
The healthcare world is in a constant state of evolution, with new technologies and methodologies revolutionizing the way healthcare is administered. HIEs have become a cornerstone in this landscape, facilitating a new era of data interoperability and integration. Recent developments, however, have introduced a significant innovation: the concept of HDUs.
Introducing their glowed-up version: Health Data Utilities (HDUs)
Unlike HIEs, which focus on the exchange of data, HDUs are designed to enhance and utilize this data for broader goals, including public health, quality improvement, and care coordination.
Think of it as a shared public-private data resource that can benefit numerous stakeholders across numerous organizations by making all of the data actionable vs. “just” housing and integrating it all into one spot.
HDUs, as defined by Civitas Networks for Health, are entities, typically state-designated, that aggregate, enhance, and exchange electronic health data for a range of health-related purposes, from treatment and care coordination to public and population health. Unlike traditional HIEs, HDUs emphasize multi-stakeholder organizational and data governance. They usually function as non-profit organizations or independent state agencies and are built upon existing data exchange infrastructures, like HIEs.
For a thriving HDU, the essential conditions include state policy levers, extensive stakeholder engagement, mature Medicaid and public health use cases, multi-stakeholder governance, and high standards for data privacy and security. Their aim is to serve as a robust data infrastructure, integrating clinical and non-clinical data while prioritizing privacy and security.
In my “want all the data” mind, I could see the concept growing to expand well beyond the clinical patient record, such as:
Claims and corresponding analytics (Quality, Pop Health, Cost, etc.)
Community resources & directories (such as community-based organizations to refer people to for non-healthcare social needs like food, housing, etc.)
SDOH and other Assessment information
Social service referral information and in some cases mechanisms
Public health data (such as vital records, immunizations, epi reporting, etc.)
and possibly more.
Not only as an integrated repository, but also as a richly enhanced analytics insight engine to serve healthcare, policy, public health, community health, and community organization stakeholders across the ecosystem—just to name a few. Someone bring me back down if I’m thinking beyond the realm of feasibility (as usual) here.
Why the Shift from HIEs to HDUs?
The case for this evolution was articulated well before its time by David Horrocks and John Kansky in their 2020 HIMSS article “HIEs Are Vital to Public Health, But Need Reshaping.” As not-for-profit entities that are closely tied to states and are governed by stakeholders, HDUs offer an optimal balance of agility and responsiveness to public/population/community health needs.
The duo drew an analogy between HIEs and electric utilities. Like these utilities, HIE networks should create regulated connectivity, a network that everyone can utilize to transmit information. Competitive innovation should occur on this network, allowing for both regulated and unregulated parts of the ecosystem.
This idea is not just theoretical. In October 2022, the Maryland State Legislature passed a bill authorizing its state-designated HIE, CRISP, to operate as an HDU. CRISP is now charged with offering real-time data to individuals and organizations involved in patient care and public health.
Why is This Important for the Future of Healthcare?
The COVID-19 crisis underscored the need for efficient, effective data sharing in healthcare. In 2023, as healthcare equity and preventive health are in the spotlight, the timeliness and comprehensiveness of data are not just beneficial—they are essential. HDUs are positioned to address these needs and strengthen state data infrastructure.
HDUs represent a step towards a more integrated, comprehensive, and efficient healthcare data infrastructure. By combining and effectively leveraging clinical and non-clinical data sets, such as claims, community resources, public health reporting data, clinical data, etc., HDUs enable complex use cases that inform care delivery, population health management, and policy at multiple levels.
They are designed to support extensive collaboration, thereby enhancing interoperability and addressing data challenges to provide greater value for state agencies, healthcare providers, payers, and, ultimately, patients. HDUs prioritize public health and health equity, aiming for better outcomes and lower costs.
Challenges and Need for Federal Support
Morgan Honea, EVP of Contexture and president of The Consortium of State and Regional Interoperability did well to highlight the issue of sustainable funding in an article I’ve referenced. Honea argues for changing the funding models to provide HDUs with ongoing, stable support, potentially via public health infrastructure and Medicaid programs. He also underscores the federal government's critical role in setting interoperability standards for public health and healthcare IT systems.
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If effectively implemented (and utilized), HDUs could represent a significant advancement in healthcare and analytics as we know it, keeping HIEs relevant and evolving towards more collaboration. And that is utterly paramount if we want any kind of change to the status quo.
Actionable Idea of the Week:
If you are a healthcare leader passionate about the power of data to impact healthcare, consider getting involved in advancing the potential of HDUs in your state. That means connecting organizations/efforts that need to be brought together, contributing your own data, helping to ideate how a resource like this could impact the healthcare landscape in your community (across organizations), of course USING this information if it is available to you, and most importantly: helping to actually make it happen.
One thing that will not fly anymore is the “that’s how we’ve always done it mentality”—a personal pet peeve of mine. This doesn’t just show up as resistance to changing business models internally, which is what people commonly think of it as. It also greatly shows up as resistance or assumptions made about things based on how they used to be… or have always been. We do this a lot in healthcare. For instance, if you think HIEs are not valuable for some reason that was true 10+ years ago, and continue to parrot that now, I encourage you to engage/explore 1) if it is still true and more importantly, 2) help us to get there because one organization can’t just “go it alone,” which is (again) how we’ve always done it in healthcare (read: siloes and massive duplication of efforts).
For the major change to happen in healthcare that we all seem to want, we’re going to need a lot more major collaboration, challenging our existing inertia of ingrained culture and mindset, and willingness not only to embrace new ideas but to actually help push them forward… beyond just our four walls.
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If you’re interested in learning more about the HDU concept, here are some great resources:
Civitas Networks for Health: Consult Civitas' resources for comprehensive insights into health data utility models. They have a lot of resources on this concept including a framework, educational briefs, and a Health Data Utility Framework Guide to Implementation. Their CEO, Lisa Bari, is also a great resource to follow on Linkedin and speaks a lot about this topic. Here is a podcast she recently appeared on HIT Like a Girl podcast to discuss it (which inspired this issue’s topic, if I’m being honest).
The Consortium for State and Regional Interoperability (CRSI) just announced at HIMSS23 an HDU Maturity Model to “offer a starting point and a path forward for health care, health data, and government leaders to follow in the way that is best for their state and model against which it can measure gaps with its current state.” Version 1.0 is the current version at the time this issue was written.
What Distinguishes HIEs From Health Data Utilities (HDUs)? One perspective from EHR Intelligence.
What Distinguishes a Health Data Utility From an HIE? Another perspective from Healthcare Innovation.
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As healthcare continues to evolve in the digital age, the emergence of HDUs represents a potentially transformative shift, supporting a future where data-driven healthcare can reach its full potential by leveraging numerous sources of data, innovation, collaboration, and new models. And—as an analyst at my core—I could not be more Here. For. It.
But we need to work together to get there.
And that is certainly NOT the way we have always done it.
See you next week!
-Stefany
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