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THIS PAST JULY, Ashley Sylvester, a director in UNLV’s advising office, joined the video meeting of Nevada’s Patient Protection Commission to share her story. In May of 2017, she’d given birth to her daughter. She’d had a C-section due to complications during her pregnancy, but they weren’t that serious — certainly not enough to prepare her for what came next.

“I did not feel good, even after hospital release,” she tells Desert Companion. "Other people I talked to who went through the same procedure weren’t experiencing what I was. I lost 40 pounds in three weeks, was ghost-white, my incision kept opening. And my OB-Gyn was kind of dismissing my concerns as normal.”

By 3:30 a.m. June 6, Sylvester was in the ER with a massive pulmonary embolism.

“I had partial heart failure, post-partum cardiomyopathy, pneumonia, two blood transfusions, and pleurisy,” she says. Eventually her doctors diagnosed her with both anti-phospholipid syndrome, a rare blood clotting disorder, and lupus, but they still aren’t sure why she experiences some of the symptoms she does. She’s under the care of eight specialists, along with primary care providers, lab technicians, radiologists — each with their own electronic health records software, patient portal, app, login, password, and so on.

This is why Sylvester told the Patient Protection Commission her story: to give a clear, if extreme, example of the burden on patients to coordinate sharing their own health information among various providers. Sylvester is constantly updating one doctor on what another one has found or the drugs they’ve prescribed, sending labs or images requested by one physician to others. It’s time-consuming for someone who’s good at self-advocacy, overwhelming for someone who isn’t.

“Cross-care communication would be really good, so that, as patients, it isn’t on us to keep everything updated,” she says. “Chronic illness is so emotionally and mentally taxing. Patients shouldn’t also have to worry that X number of specialists have all your records and labs.”

Michael Gagnon thinks he has the solution to this problem. Gagnon is the executive director of HealtHIE Nevada, a health information exchange, or HIE (hence the “HealtHIE”). He describes an HIE as the medical equivalent of ATM technology in banking, which allows customers from any bank to get their money at any machine. If HealtHIE Nevada were commonly used, Sylvester and her doctors could see her entire medical history in one place; trafficking files among them would be unnecessary.

“You can think of it like any other utility, but for health data,” Gagnon says. “Everyone needs to connect to this thing; there’s only one of them; and we’re going to use it to improve the health of all Nevadans.”

A series of federal regulations in the mid-2000s set up the framework and funding to encourage states to establish HIEs. Though Nevada missed out on much of the funding due to its inability to match grants, it still benefits from the regulations, such as one in 2016’s 21st Century Cures Act that forbids providers from refusing to share health information.

“When you create an organization-based record, it belongs to that organization,” Gagnon says. “They’re not highly motivated to share information with other providers unless you ask.” The law made it mandatory to respond to these requests electronically.

It’s important to distinguish between electronic health records, “EHR” in industry-speak, and health information exchanges. In the ATM analogy, EHR would be each individual bank’s software, while HIE would be the common platform for distributing cash through machines.

Practically speaking, an exchange works by enlisting providers — hospitals, labs, pharmacies, practice groups — to participate. Participating providers send HealtHIE Nevada patient data, and HealtHIE Nevada converts all that disparate information into uniform records in a searchable database. For the service, HealtHIE Nevada charges a fee scaled to each provider’s size, around $300 a year on average.

One catch in Nevada is that healthcare providers need consent to see patients’ records (except for those on Medicaid, which includes default consent). In other words, we’re an opt-in state. So even if your primary care doctor and gynecologist are both in the exchange, neither can see test results or diagnoses from the other unless you’ve given them permission to do so.

One of Gagnon’s goals for 2020 was to lay the groundwork for changing this in the 2021 legislative session. Then came the COVID-19 pandemic and the governor’s public health emergency declaration allowing HIEs to operate under federal rules, which default to opt-out. HealtHIE Nevada was able to open all its patient records for viewing, and it also suspended user fees. Participation surged, increasing the number of patient records viewed from around 4,000 per day to around 9,000, according to Gagnon. Hospital participation in the surge has remained steady, at about 75 percent of the state’s facilities, but provider participation has jumped from 15 percent to 25 percent.

But the emergency’s best outcome, Gagnon believes, has been HealtHIE Nevada’s opportunity to demonstrate the exchange’s value to the overall healthcare system. Imagine having a surge of patients show up at your office or ER during a pandemic and being able to search a universal database for their pre-existing conditions, risk factors, and test results so that you can treat/quarantine them accordingly. HealtHIE Nevada was able to realize that scenario for members such as the Northeaster Nevada Regional Hospital in Elko and the Southern Nevada Health District in Las Vegas.

“The Washoe County Detention Facility was already using (the exchange) for their own purposes, but now they have access to all kinds of information they didn’t have before,” Gagnon says. “They had inmates come in with COVID-19 symptoms, so they’d put them in isolation. Then they used our system to find out whether an inmate had tested at a Nevada public health lab.”

Still, it’s easy to imagine the hurdles in the path of an HIE’s success. The tech company in charge has to develop a program capable of collecting data in myriad formats and converting it to a standard one whose search criteria satisfy the needs of diverse users. It has to persuade health care providers and their EHR vendors that it’s worth the cost and hassle of participating. And it has to persuade patients that their privacy will be protected.

“It does require buy-in up and down the information supply chain,” Gagnon says.

HIEs have faced these challenges in other states, including Vermont, whose HIE Gagnon worked for before moving to Las Vegas three years ago. Amid a struggle to satisfy all its HIE stakeholders, the Vermont board that oversees it hired a health technology consultant to analyze what was going wrong. The contractors studied HIEs nationwide and found Vermont’s problems were nothing new.

“Organizations have attempted to provide for the electronic exchange of digital health information between the clinical systems of non-affiliated providers for almost 30 years, beginning with Community Health Management Systems in the early 1990s,” the report read, quoting an academic study by Joshua R. Vest and Larry Gamm. “These initiatives have consistently faced technical, economic, and political challenges limiting both interoperability and sustainability.”

The solutions the contractor recommended mirror Gagnon’s hopes for HealtHIE Nevada: Create a public-private partnership with a nonprofit fundraising arm to keep it financially viable and a governing board to keep it accountable to participants and the public.

“The idea is to create something that takes it out of the hands of private parties,” he says. “It isn’t going to be owned by Renown or HCA (hospital corporation); it’s a community service. So, it has to be regulated, and the Patient Protection Commission is a perfect body to do that.”

Which brings us back to Ashley Sylvester and her testimony. “I think, like with everything, there are pros and cons to an HIE that patients need to weigh,” she says. “There are security issues. Who has access to my records, and what are they going to do with them? And then there’s the patient education piece that needs to go with it. But at its foundation as a technology that can relieve the burden on patients … it seems like a very big step in the right direction.”

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