Health Data Utilities Viewed by Some as Option to Improve Data Sharing

Several states are moving beyond health information exchanges (HIEs) and developing statewide, nonprofit health data utilities (HDUs) to connect a wide range of health entities that have never before shared data with each other.

Maryland, Oregon, and Arizona are among the states in different stages of establishing HDUs.

HIEs were developed more than two decades ago to share patients’ electronic health information across hospitals and health systems. HDUs are intended to connect health systems with public health departments, claims data, prescription drug monitoring, community organizations, and social service providers so that all providers and partners caring for patients or battling a public health threat can share comprehensive information in real time.

Health information (HI) professionals are reimagining billing, coding, and privacy systems as the momentum builds for establishing HDUs. They will play a key role and provide guidance to help ensure patient privacy and efficient data sharing as HDUs are developed, experts say.

“This is a relatively new concept and it’s evolving quickly,” says Jolie Ritzo, MPH, vice president of strategy and network engagement at Civitas Networks for Health, a national nonprofit collaborative comprising member organizations working to use health information exchanges to improve health.

A challenge facing HI professionals and others working on HDUs is establishing a safe framework to address privacy consents. Privacy rules differ by state, and many states have layered their own privacy regulations on top of Health Insurance Portability and Accountability Act of 1996 (HIPAA) regulations.

Added to that are questions surrounding sensitive considerations such as how to move criminal justice information around the system so only the right health service providers see it.

“Consent is a really critical part that we have to get right,” says Morgan Honea, executive vice president of Colorado-based Contexture.

Honea says managing data quality is essential to the success of HDUs.

“Data quality, network security, and governance are key components to fully recognizing the benefits of a state-based HDU,” he says. “Continuous data quality improvement is critical to ensure data can be translated into information and knowledge. Governance is critical in recognizing local and state priorities for HDU activities, and robust cybersecurity programs are critical in maintaining trust in the network.”

So far, Maryland is one of the only states that has passed legislation recognizing the term health data utility, which is critical to advancing the model, Ritzo says. Civitas collaborated with the Maryland commission to develop a Health Data Utility framework, which it released in March.

As of October 1, 2022, Maryland requires the state’s HIE to operate as an HDU  for certain purposes, according to the Maryland Health Care Commission. The commission says an HDU “has advanced technical capabilities to support electronic exchange of clinical, non-clinical, administrative, and public health data to enhance care delivery, bolster population health, and expand public health reporting.”

Bridging the Gap Between ‘Data and Doing’

The overall concept of HDUs is to go beyond just moving data to “bridging the gap between data and doing,” Ritzo says.

She gives an example of caring for a patient with a chronic disease such as diabetes. Because HDUs seek to collect information on social determinants of health (SDOH), providers and community partners would, with privacy permissions, have answers to questions such as whether that patient also is isolated, has access to transportation or healthy food, or has the mental or behavioral support they need.

Additionally, with an HDU, when referrals are made from health systems to community programs, such as nutrition programs or counseling, the system will let providers know whether a referral has been received and the clinician who made the referral gets information back on what services were performed outside the health system and whether the patient’s health status changed.

Ritzo says establishing HDUs will likely be more complex in states such as Texas with multiple regional HIEs compared to a state such as Maine, which has only one HIE.

Oregon in Early Stage of Development

An HDU taking shape in Oregon is in its early stages.

Richard Gibson, MD, PhD, medical director of Comagine Health, the neutral convening body for the state’s HDU, says community-based organizations have come to the table first to begin establishing an HDU and work on its governance. He would like to see some of the first functions coming on board in the next 18 months.

First, organizers must dismantle some siloes.

“We’ve had some community information exchange, and we’ve had some health information exchange, but they really haven’t talked to each other,” he says.

Additionally, he adds, at least in Oregon, public health has worked mainly within its own walls.

Gibson says one of the benefits of HDUs is that they can enhance the response to natural disasters and pandemics. In a future pandemic, he says an HDU would help anyone connected with it know, by logging into a portal, where the disease is in the state, where the hospitalizations are, how many hospital beds are open and in what locations, and what’s going on with vaccinations.

“All that would be part of the information exchange, and it certainly wasn’t [the case] the last time [when COVID-19 emerged] in Oregon. So that would be a big change,” he says.

Addressing Privacy Concerns When Sharing Data

Among the ground rules to be worked out in Oregon and elsewhere are privacy concerns when information is shared outside health systems and in the community.

Permissions to share data would have to be acquired with each entity involved in an HDU. Under HIPAA, information can be shared among providers who have a relationship with a particular patient. But HIPAA rules don’t apply to community organizations.

“That is one of the functions that a health data utility can provide – a general clearance mechanism for a patient or client consent to their data being exchanged,” Gibson says.

Gibson says data sharing with HIEs has been thought of in some healthcare circles as a potential threat to competitive advantage. But he doesn’t anticipate that concern with HDUs because the information is being shared with community-based organizations that don’t pose a competitive threat to providers.

“I think providers generally will be on board with exchanging this data,” he says. Additionally, information blocking “is not going to be tolerated much longer, and there will be penalties for doing that.”

Gibson says that HDUs may be a way to give poorly funded community organizations that have felt outgunned by healthcare systems a bigger voice in patient care.

At the same time, HDUs also will have to resolve coding and billing issues.

With the launch of Medicaid 1115 waivers that Oregon and other states now have, some community-based organizations (CBOs) may be able to receive Medicaid funding for their services in housing, nutrition, climate change, and care coordination, Gibson says. That change is prompting questions such as how CBOs will bill Medicaid for their services and who will handle coding and billing services for CBOs.

Looming Challenges to Starting HDUs

Contexture’s Honea says clear direction from the federal government and sorting a tangled web of privacy considerations are among the most immediate needs when establishing an HDU.

Contexture, which is part of the Consortium for State and Regional Interoperability (CSRI), provides health information exchange services and more in Colorado and Arizona, but it’s also advocating for the HDU model nationally.

Honea says so far, “there hasn’t been that clarity and direction from the federal government. When you have that lack of clarity, people go in different directions.”

He says the federal government could direct states “to partner with their HDU to, for example, improve connectivity with private sector healthcare providers or create greater connectivity to other types of community-based organizations or social services.”

Honea says Arizona has an HDU where “we’re doing HIE, we’re working with claims, we’re managing the closed-loop referral system for the state, [and] we have the Healthcare Directives Registry.”

Other states are in widely different stages of HDU conception or implementation. And CSRI has published a model to help define what makes a mature HDU.

But Honea says the focus now is building HDUs state by state.

“Until we really move the ball down the field at the state level, I don’t know that we can comprehend what a national HDU would look like,” Honea says.

Marcia Frellick is a freelance journalist based in Chicago who writes about health information management and other health topics.