Patients At Center Of Fast-Growing Health Information Exchange

By Deborah Borfitz

April 11, 2019 | It is well known that patients empowered to take actions to manage their health and care are healthier patients who can save payers and providers money. Scripps Health estimates savings of $25 per patient from fewer phone calls and better routing of messages, and an Ohio State University study suggests nearly $90 per patient could be realized, according to Teresa Rivera, president and CEO of the nonprofit Utah Health Information Network (UHIN).

UHIN runs one of few health information exchanges (HIEs) with a patient portal designed to give individuals access and control over their data to keep them involved and informed about their own healthcare. Three years ago, UHIN’s Clinical Health Information Exchange (CHIE) launched the portal with two large employers using seed money from the Office of the National Coordinator for Health Information Technology (ONC), Rivera says. It will be available more broadly in another year or two, she adds, when it is a more feature-rich offering.

The patient portal is one of six grant-funded projects UHIN has undertaken to advance interoperability on a regional scale, Rivera says. As “convener of the community,” UHIN regularly brings to the table both large data sources such as payers, physicians and hospitals as well as those ignored by meaningful use incentives—skilled nursing facilities (SNFs), emergency medical services (EMS) providers and, most notably, patients—to collectively address roadblocks to data sharing. Its board includes a subcommittee focused on patient needs, chaired by the executive director of the American Association of Retired Persons in Utah.

UHIN is both a claims clearinghouse and an HIE, Rivera explains, with 94% of all Utah hospitals participating and contributing data as are all the state’s large clinics. Payers, including Utah’s Medicaid program, also contribute pharmacy information that is typically inaccessible through electronic health record (EHR) systems. Increasingly, data from smaller clinics and ancillary providers are being added to the mix.

Through a web services file transfer connection or use of a portal, participants can pull data on patients from outside their organization, says Rivera. Physicians decide how much of that information gets added to whatever EHR they are using.

One of the most attractive features of the HIE for physicians is notification when a patient is admitted, discharged or transferred to a healthcare facility, says Rivera. Physicians choose how to receive the news—possibly via an alert sent directly to their EHR or a real-time secure message. This has been particularly useful for those in behavioral health organizations whose patients are at risk of ER shopping for drugs. Payers also like to keep an eye on “frequent flyers” to the emergency room to guide their care coordination and management efforts.

Portal Fatigue

The patient portal, called MYONECHART, has signed up only about 20% of 500 invited employees, Rivera says, mostly because healthy Millennials have no pressing need for it. The portal has understandably proven most popular with older adults living with a chronic disease and regularly visiting their doctor. It is also purposefully being kept small while UHIN bakes in new features and works out the kinks, she adds.

The portal is currently used by patients to pull up their consolidated record and push it to a physician through Direct Secure Messaging, Rivera says. Patients can also securely communicate with their physicians this way, for example to request an appointment. They can see the provenance of data in their record to know which information was contributed by whom and when. The CHIE is in the process of being connected with the state’s immunization registry so that information will soon be available for sharing as well.

This year, the portal will become more user-friendly for those caring for children and youth with special healthcare needs covered under the state Medicaid program, Rivera says. “These patients end up with large records, so we want to show a different, more summarized view where physicians and parents can quickly get some key information. We also want to give parents access to the patient portal so they can push those records or have them available when needed.” The first step is to get physical, speech and occupational therapists who routinely see this population connected to the CHIE.

Once the proxy access process is established for parents, Rivera continues, it can easily be extended to adult children caring for their mother or father. Unlike the parents of kids with special needs, adult caregivers don’t always know when their senior parent is in the hospital, so a notification of admissions would be particularly helpful, she says.

“We want to get this proxy access down before we do anything big,” Rivera says. The authentication process is the chief technical hurdle to broader adoption. Employer codes are being used in the pilot phase to reduce hacking and requires users to answer enough questions correctly to verify they are who they claim to be.

“An API (application programming interface) might generate more interest,” she says. “People may not want to use this portal but some other health record to access their data.” On the other hand, the Centers for Medicare & Medicaid Services (CMS) requires that participating providers have a patient portal and it may make sense—in addition to being more economical—to share a common one. “Patients are tired of multiple portals.”

Connecting the Dots

Getting the state’s largest EMS provider connected to the CHIE and contributing both transport and non-transport data provides valuable information in coordinating care. The Utah Falls Prevention Alliance Group discovered that that nearly 50% of EMS visits were with patients who were never brought to the hospital, says Rivera. Many were fall assist cases, and that information will now be combined with medication profiles and comorbidity data to create a tool to identify patients at risk for a future fall and possibly a hospitalization. The initiative was sparked by the Utah Falls Prevention Alliance, but UHIN is pulling together providers, community organizations and payers with the CHIE to discuss how to intervene earlier to prevent injury-related deaths and hospitalizations among older adults.

Next up is a project suggested by the Utah Department of Health to create an electronic registry for Physician Orders for Life-Sustaining Treatment (POLST) documents, to make them readily accessible to non-physicians such as EMS providers, says Rivera. Many states have created their own version of these medical orders that travel with the patient, and a national harmonization effort is underway, but they’re all similar, she adds. An earlier initiative to create a registry never got past the pilot phase because it required manual data entry that physicians found cumbersome.

A consortium of SNFs, EMS providers, emergency room physicians and patients created a POLST requirements document, says Rivera, and UHIN is applying for a grant from the CMS to build the electronic registry. It will be particularly valuable to SNFs, since state rules dictate that they present POLST to patients upon admission, she adds.

UHIN also actively participates in the CARIN Alliance, intent on enabling consumer-mediated health information exchange, and OpenNotes, an international movement that urges health systems to expose their clinical notes to patients, Rivera says. Apple is also a member of the CARIN Alliance, giving Rivera the opportunity to make her case that its Health Record app start supporting data provenance when multiple providers are contributing information. iPhone users might then have access to health data beyond what’s in a single EHR.

One Home for Data

The end game for UHIN is to ensure everyone everywhere has a patient-centered data home, in keeping with an initiative sponsored by the Strategic Health Information Exchange Collaborative to create a nationwide network, says Rivera. The CHIE has to date connected to 22 other HIEs—nearly one-quarter of those in existence—most importantly the ones in contiguous states such as Arizona and Idaho. If Utah residents receive healthcare services in any of those states, the data comes back with them via the CHIE.

The CHIE connects directly with hospitals in Wyoming and Montana that are still trying to stand up their own HIE, Rivera notes. In fact, UHIN is acting as a volunteer consultant to help make that happen.

The zip code of Utahans prompts out of-state providers to contact UHIN to see if their records are in the CHIE and, if so, an alert is sent to their doctor, explains Rivera. As messages are sent and received, a master patient index helps ensure both parties are talking about the same patient. All HIEs use sophisticated algorithms for patient matching, after which individuals are assigned an enterprise ID so a simple query will turn up the same patient in the future. 

Increasingly, clinical information is being exchanged with other HIEs—an important development, given the large inflow of people coming to Utah for medical care, she adds. In collaboration with Intermountain Healthcare, UHIN is now looking at ways to improve the accuracy of patient matching. One promising approach is to include patients to alert HIEs of wrong matches or missing information and help identify records that should be linked.

The Road Ahead

Up until now, UHIN’s experience with APIs has been largely on the claims side of the house, says Rivera. The exception was during initial development of the patient portal, when the Blue Button 1.0 API of CMS was used to call up clinical records. When that evolved into Blue Button 2.0, the API no longer worked well for clinical data so it will be used in the future only for grabbing claims information. A different API will be used for clinical information, based on Fast Healthcare Interoperability Resources (FHIR)—the public interoperability standard for electronic exchange of healthcare information that the CMS and ONC recently made part of the proposed certification criteria for health IT.

UHIN now has a roadmap it will be following for implementing FHIR-based APIs, Rivera says. For the patient portal, the interfaces will allow individuals to pull data from their personal health records no matter where they reside, she says. As a clearinghouse, UHIN has also been following use cases of the Da Vinci project in digitizing manual, error-prone processes between payers and providers. Rivera is particularly interested in a FHIR-based prior authorization API under active development that would enable providers, at the point of service, to request authorization—including all necessary clinical information to support the request—and receive immediate authorization.

“Prior authorization is a real burden on industry now, and costly for both payers and providers,” Rivera says. “Through a FHIR API, providers could identify what needs to be preauthorized and what they’re required to send in for those authorizations. So, it would not only support the clearinghouse but also lessen the burden on providers in gathering needed medical documentation.”

The longer-term plan with the portal is to enable patients to learn of their deductible and out-of-pocket status, as well as schedule appointments, says Rivera. Patients might also be able to submit comments to providers on their clinical notes and perhaps even “amend or append” them in some way. “Providers don’t necessarily want patients changing their notes, but they would appreciate patients’ feedback if they believe something is incorrect or is not detailed enough.”

UHIN is “inching” its way toward consumer-mediated exchange where patients can push data where they want and take it with them in a secure device, Rivera says. In the future, patients are likely also to be directly contributing their data for clinical trials—the main reason why so many researchers are in the CARIN Alliance. But she believes all stakeholders need to be part of health information exchange, meaning patients together with providers and payers.


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