Medical data sharing: Are we there yet?

Fifteen years ago, if you entered an emergency room a thousand miles from home, the ER doctors would not have had access to potentially lifesaving information in your medical records, such as your allergies or a list of drugs you were taking. Only 10% of US hospitals had electronic health record (EHR) systems, and health record requests were typically sent in paper form by mail or fax machine. Then the federal government stepped in, providing billions of dollars in EHR incentives to help hospitals get online.

“Today, 96% of hospitals and 85% of ambulatory providers [and] physician offices use EHRs,” says Micky Tripathi, national coordinator for health IT at the Office of the National Coordinator for Health Information Technology (ONC) under the US Department of Health and Human Services.

ONC has created standards for EHR systems, provided certifications for compliant EHR products that qualify for incentives, and created standards for sharing EHR system data sets. Until recently, however, the data in those systems has largely remained in silos, with limited accessibility.

That’s been changing with the rise of regional, national, and vendor-driven health information exchange networks. About 70% of all hospitals and ambulatory providers are sharing records electronically over national interoperability networks, says Tripathi, but have fallen short of providing complete access to patient data from all providers. The planned rollout later this year of government-certified Qualified Health Information Networks (QHINs), which Tripathi says will function as a “network of networks” for sharing health data nationwide, should help push participation levels higher.  

However, the scope of what nationwide health information exchange networks offer today is largely limited to treatment, and data is limited to basic information, such as demographics, medication lists, problems and allergies, recent labs, and most recent visit summaries. While radiology reports may be included, images are not. Also, information is shared in document form rather than as discrete data elements, which limits the granularity of data requests. And participation in data exchanges remains optional for all stakeholders, including healthcare providers, payers, and patients.

While many hospitals are connected to nationwide health information exchange networks today, about 30% still don’t participate in nationwide data-sharing networks, “probably due to technical limitations of their EHR systems, lack of staff expertise or capacity, lack of resources to connect, and so on,” says Tripathi.

Many of those are smaller providers, says Paul Wilder, executive director at CommonWell Health Alliance, one of the QHIN candidates. “When it comes to smaller practices, we have a lot of work to do,” he says.

Also, patients and payers (health insurers, Medicare, Medicaid, the Department of Veterans Affairs, and so on) can’t directly access information on most exchanges today. Payers tend to use many point-to-point connections, he says.

Technology issues aren’t the only barrier. The culture in hospitals and other healthcare providers, and a preference for existing workflows, have slowed both the adoption and use of information sharing networks.

For now, electronic health records remain fragmented among hospitals, doctors’ offices, pharmacies, walk-in clinics, home health providers, hospice organizations, long-term care givers, dental offices, chiropractors, emergency response teams, and other healthcare providers. “This is still a mass-fragmentation moment,” says Neal Batra, future of health lead at Deloitte Consulting.

EHR systems crack open: Rise of the exchanges

A flurry of activity in the last few years has set the stage for nationwide provider access to clinical patient health data at any time, anywhere in the United States. “Much progress has been made in the last five years, says John Halamka, president, Mayo Clinic Platform.

The Centers for Medicare and Medicaid Services (CMS) implemented the interoperability rule in 2020, removing barriers that prevented patients from accessing their health information. As part of its 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program Final Rule, ONC also issued version 1 of the US Core Data for Interoperability (USCDI) standards, to which vendors must comply to be certified by the ONC. (Healthcare providers qualify for incentives only when they purchase certified EHR systems.)

Then, in 2021, the information blocking rule went into effect, requiring EHR system vendors, providers, and other parties to share data specified in USCDI v1. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) “defined where organizations can exchange information without having to get consent from the patient,” ONC’s Tripathi says. “You were permitted to share information with other parties involved in treatment, payment, and operations, but not obligated to do so. Now, in areas where providers, EHR vendors, and health information networks are permitted to share information, they are required to do so.” And in 2022 the rule was expanded to include data beyond that specified in the USCDI.

In 2022 ONC also published the Trusted Exchange Framework and Common Agreement (TEFCA), a 21st Century Cures Act requirement to “establish a universal floor for interoperability across the country,” along with the Qualified Health Information Network Technical Framework, which set in motion the process for existing health information networks to apply for designation as QHINs under TEFCA.

Healthcare providers can choose to work through any one of the QHINs to access clinical patient data for treatment purposes. (Version 1 of TEFCA, released in January 2022, authorizes six exchange purposes — Treatment, Payment, Health Care Operations, Individual Access Services, Public Health, and Government Benefits Determination.)

The official QHINs, which should gain final approval starting later this year, include Epic TEFCA Interoperability Services, CommonWell Health Alliance, Kno2, KONZA, Health Gorilla, Carequality, and MedAllies.

Providers need only join one exchange to access all records in the network. If they choose to participate, they can then access basic patient data from other providers and, if they feel that the data is relevant and trustworthy, pull it into their own EHR systems, says Lisa Stump, chief information and digital transformation officer at Yale New Haven Health.

Most providers today have access to health information exchanges (HIEs) for EHR data sharing, but those were developed to serve different constituencies. CommonWell Health Alliance, for example, was initially launched by a handful of competing EHR vendors including Cerner (now Oracle Health), while Epic Systems created Care Everywhere for users of its products and is involved in another vendor consortium, called Carequality, for data exchange outside of its network.

The eHealth Exchange serves government agencies, some EHR system vendors, and some individual providers through connections to state and regional HIEs — for example, Yale New Haven Health participates in the State of Connecticut’s Connie HIE.

Health Gorilla has focused on connecting small providers that couldn’t afford EHR systems from market leaders Cerner and Epic. “Health Gorilla grew up as a venture-backed startup to address interoperability problems faced by small office providers,” says Dr. Steven Lane, chief medical officer.

As a QHIN, he says, the firm will support patient access leveraging the TEFCA “individual access services” use case. (Not all QHINs will, he adds.) Committed to serving the needs of providers that historically have been excluded from nationwide interoperability, Health Gorilla also intends to provide QHIN services to providers in home health, hospice, long-term care, dental offices, and chiropractors, as well as physicians using EHRs and other health IT systems that have not historically been able to access connectivity services, including HIEs.

Today’s exchanges and the coming QHINs take somewhat different approaches to providing data, says Lane. “Most HIEs act as a centralized data repository, while QHINs will be of two types: Some will exclusively pass through data from one data holder to another, while others will aggregate, normalize, maintain, and curate patient data in the manner of regional HIEs.”

In the EHR systems space, there are literally hundreds of smaller players out there, especially those focused on specialties, says Kathryn Bingman, vice president of interoperability adoption at eHealth Exchange — so many healthcare providers don’t use the major EHR systems that are connected to the exchanges, and some still don’t use EHR systems at all.

For providers that do have an EHR system, the various exchanges available today provide access to limited clinical data for most patients in the country. “eHealth Exchange participation includes about 75% of hospitals in the US, plus five federal agencies,” says Bingman.

CommonWell claims to be the largest exchange, with 80% of providers connected to its network and access to 208 million patient records, according to executive director Paul Wilder. 

Cultural and workflow barriers persist

“While most hospitals are connected today, a lot of people in those hospitals don’t know that, and the workflows haven’t been solidified,” says Wilder at CommonWell.

Yale New Haven Health is connected to the Connie exchange, as well as CommonWell, Care Everywhere, and a few smaller, proprietary vendor repositories. Remote patient EHR data is accessible, but it’s still up to clinicians to access it, says Stump. And while most clinicians access some part of a remote record 80% of the time, “there are other areas at the other end of the spectrum, where the outside record is accessed far less often. It only happens there 20% of the time,” she says. “We still have work to do in optimally utilizing external data when available.”

While Stump is still investigating the reasons why some clinicians aren’t making full use of data exchanges, changing established culture and workflows may be part of the challenge. “Many providers don’t even know that there’s a button they can press,” says Wilder. “The technology is in place, but they don’t know it’s there.”

Tripathi calls this the “last mile” issue. “Front-line staff need to move away from their instinct, which is to use paper and fax,” he says.

It’s also possible that some clinicians simply haven’t gotten into the habit of checking, Stump says. “But I’m also hearing from clinicians that the format of the data doesn’t always make it easy for a physician, in the moment, to get at the salient points. Clinicians say they feel that the continuity of care document [the CCD, which contains the patient’s clinical information summary] is cluttered and doesn’t always have what they believe are the most relevant pieces of information.”

Today, that document includes several sections containing basic information on such things as advance directives, alerts, encounters, family history, functional status, immunizations, medical equipment, medications, payers, plan of care, problems, procedures, purpose, results, social history, and vital signs, according to the DHS.

Additionally, it will take some time before clinicians trust the baseline patient data that comes in through the exchanges. “There’s no trust that the data is complete,” says Wilder. “The 20% that might be missing might be the most important, so they often request both electronic and paper records,” especially for critical areas of practice, such as cardiology.

Next page: The document problem, gaps in the system, more →

From documents to discrete data

One challenge for doctors in accessing data from current HIEs is that patient records are stored as documents, rather than as discrete data elements that can be queried to return exactly the information the doctor most needs to know when they need to know it.

“Exchanging data using standardized documents is not the best solution for all types of exchanges,” says Health Gorilla’s Lane, so “ONC is pushing forward to support TEFCA exchange using Fast Healthcare Interoperability Resources (FHIR), an open-industry standard created by [electronic health information standards group] Health Level Seven for data sharing using modern application programming resources (APIs).” FHIR “provides for the more flexible exchange of data elements for both public health and payer exchanges,” Lane says.

“The FHIR and TEFCA standards are improving interoperability, creating standards for data exchange, and pushing the responsibility from developers to the providers who use those systems,” Stump says.

“By using FHIR, we’ll be able to support many additional use cases, and it will be more efficient in many cases,” says Lane. However, the QHINs and EHR system vendors will need to update their systems to support the new FHIR standard. “We’ve had slow uptake of FHIR on the existing exchanges,” Lane says. But, he adds, “Everything is moving forward in a coordinated manner. We’re going to see a big shift in interoperability over the next five years or so.”

Another challenge is that EHRs are built on legacy technologies, says CommonWell’s Wilder. “They still use old-school SOAP and XML on the edge, while phones are using RESTful services. It’s kind of archaic, but it works.”

The gaps

At this point not everyone is connected, including providers using smaller EHR system vendors, state exchanges, and 30% of hospitals. Bingman from eHealth Exchange is painfully aware of the consequences of being a patient at one of these hospitals. Her records are locked up in a hospital that doesn’t yet share its data. “They have an old, antiquated system, they don’t want to join our exchange, and I can’t get to any of my information,” she says.

The launch of the QHINs won’t connect all these organizations instantly, says Tripathi. “Those are the gaps that TEFCA will fill. We will identify the hospitals that aren’t connected and help them get into these systems.”

So far, 51% of hospitals are aware of TEFCA and will participate in the QHIN exchanges, according to an ONC data brief. If that sounds low, just 1% said they would not participate, and Tripathi expects most hospitals to join as the QHINs get closer to launching. “None of the vendors are charging additional fees for connecting to these networks at present,” he says, so “budgets will — hopefully — not be an obstacle.”

Also, says Bingman, “lab providers aren’t connecting with eHealth Exchange.” Labs such as Quest Diagnostics could be part of an exchange, but the lab data already goes back to the ordering hospital or a physician’s office.

While labs share data with the physician offices in most cases, the fact that they’re not participating in the exchanges still represents a gap, she says. “For example, lab results ordered by hospice or specialty practices that don’t use the larger EHRs will not be included.”

Medical imaging is another big gap. “If you have a CT scan today, you have to pick up the image and bring it to your doctor on a disc,” she says. Also, paramedics and emergency medicine would benefit from having basic medical information on patients, including medications.

There’s also a limit to the types of data provided. For example, the major EHRs receive information from pharmacies as to what medications have been prescribed, but not whether they were picked up or consumed.

Some technical aspects of integrating provider EHRs with exchanges also need working out. “Today there’s still no universal data architecture,” Stump says. Yale New Haven health chose the OMOP Common Data model and must map data to it.

“It takes work to make that happen seamlessly,” she says. “Every time a payer changes a field name, I have to change my interface to have it map that data field to my model. Data standards and governance need to be more universally taught and used.”

Wilder at CommonWell agrees. “If you ingest data, you have to have a data model,” he says. “So when a vendor’s data model changes, you have to redo it or the downstream consequences can be very severe.”

Another issue: The QHINs will only allow data sharing within the US and its territories, so those traveling abroad will still need to take their records with them — if they have full access to those records. “Global interoperability is something we need to work on,” Tripathi says. But patients do have the ability to download the USCDI summary of their records or access them through portals or apps, he adds.

One idea to make this even easier is to give patients a QR code that either provides an overseas hospital with basic health information, or that allows the hospital to access the patient’s record securely. “That’s not in place today, but we’re exploring that with the [SMART Health IT] API,” he says.

Interoperating with healthcare systems abroad would carry its own unique challenges. In the European Union, for example, member countries form a single trading block, but have different models for healthcare, says Tripathi.

“In the UK, the National Health Service comprises a single payer, and all providers are under the same organizational umbrella, so the data is, in effect, combined, [while] in Israel, three or four HMOs cover the entire country, so nationwide data-sharing is easier to figure out. The point is that interoperability is easier within those countries that have more integrated or consolidated healthcare delivery systems, [but] that doesn’t necessarily mean that interoperability between those countries is that much easier,” he says.

Finally, there’s some data that may never be included in provider-centric EHR systems and data exchanges. “EHRs are heavily indexed around clinical data,” says Batra at Deloitte. They’re essentially billing systems that capture data that’s useful to clinicians. “But there’s a whole slew of health information that goes beyond that, including environmental, behavioral, emotional, cultural dynamics. When integrated, that can change how you interpret the clinical data.”

That, he says, probably won’t come from the incumbent EHR vendors but from patient-centric “disruptive entrants” that are focused on consumer access. In that race, there are “literally thousands of organizations trying to figure this out,” but no standards or winners yet.

The five-year journey ahead

Once the QHINs are up and running, the next step is to expand the purpose of use beyond treatment and individual access, says Bingman. Payments and operations will come up next. “Right now, payers aren’t participating in the exchanges,” she says, so claims and clinical data remain separate. Data exchange for public health use, such as by government agencies, is also a major focus.

The push to get to 100% participation from all types of healthcare providers will also need to continue. Incentives may help. “TEFCA isn’t going to be a cure-all,” says Bingman. “It depends completely on how this rolls out and what kind of teeth CMS [the Medicare and Medicaid payer] put into it. If CMS makes a rule that they’ll pay more if providers exchange data electronically, or pay less if they don’t, that’s when providers will say ‘we have to do it.’ CMS can use the carrot and stick pretty well.”

“We’re at least a year away from any big movement, and it will probably be longer than that for using exchanges for additional purposes,” such as life insurance, prescription drug monitoring, syndromic surveillance notifications, and research, she says.

All of this is going to take time, Wilder says. “You’ll see movement in 2024, but the tail end of the adoption curve won’t happen until 2025 or 2026. Five years out is when we finally get the remaining 30% connected.”