With proper disaster prep, Health Information Exchanges play key role in transmitting patient data.
Natural disasters, like Hurricane Florence, present challenges to health systems and providers not only in areas directly impacted, but also to those in neighboring regions who treat patients displaced by the catastrophe. One of the greatest issues: access to patient records.
Health Information Exchanges (HIEs), play a critical role in making these records available. But there's a catch. Electronic connections must be set up in advance by HIEs in the impacted areas and in locations where patients may migrate. And, health systems and providers on both sides of the disaster must participate in an HIE and be connected to a data-sharing network for the data transfer to occur.
Because HIEs are a relatively new resource, a closer look behind the scenes of the nation's most recent widescale natural disasters demonstrates the value these organizations offer and provides lessons as health systems prepare for the future.
Preparing for the Storm
In the days before Florence made landfall, Christie Burris, executive director of the North Carolina Health Information Exchange Authority (NC HIEA), was contacted by the Georgia Regional Academic Community Health Information Exchange (GRAChIE), which anticipated an influx of evacuees to Georgia.
"Via email they said, 'We're here to support you during the hurricane. What can we do?' " Burris recalls. The Georgia HIE suggested setting up an emergent connection, via the eHealth Exchange, a national health data sharing network for securely exchanging clinical information over the Internet. Burris looked into the feasibility, reprioritized resources, and reached out to additional HIEs to set up connections.
A national, non-profit HIE organization, Strategic Health Information Exchange Collaborative (SHIEC), was also involved in disaster preparations, marshalling HIEs along the Atlantic coast and nearby states to foster connections between affected regions. The records of SHIEC members encompass 75% of the U.S. population.
"I think we're a critical tool in their toolbox all the time, says Kelly Thompson, CEO of SHIEC, but especially during emergencies and national disasters.
One crucial connection NC HIEA facilitated was to a regional HIE based in Wilmington, N.C., where Florence made landfall. "We were working with their CEO; she was the only one in the office," says Burris. "She wasn't sure if she could make this happen, and we offered to work directly with her vendor since her staff had already evacuated."
The reason many of these connections don't already exist is that many HIEs are in their infancy. NC HIEA was established in March 2016. "We've been prioritizing in-state connections and connecting the hospitals, health systems, ambulatory providers, and specialists within our state," says Burris. "The out-of-state connections have been a secondary priority." During disasters, however, establishing connections to outside HIEs becomes paramount to facilitate the needs of displaced patients.
How HIEs Provide Value
One of the most common problems during disasters is the need to refill prescriptions. "When people are being rescued, they likely are lucky to get themselves out, let alone grab their medication," says Thompson. Access to patients' records ensures that replacements match the correct prescription and dosage.
People assume that events related to the disasters are the primary reason people seek medical care in the aftermath, says Thompson. "That's not always the case. Many times we're moving patients or folks who may have had existing illnesses, or we're moving them in a critical state." She cites one example of a North Carolina ICU patient who was transferred to Tennessee during Florence. Thanks to pre-established connections, the patient's care was uninterrupted.
Burris provides another example of how NC HIEA has helped following Florence. A nationwide company that provide dialysis "had about 150 to 200 patients that had either missed appointments or were overdue for appointments," she says.
"They want to work with us to query the clinical portal to see where these patients last touched the system, and if they could locate them," says Burris. "We've been working with them to get the necessary governance paperwork done so they can reach out and locate patients who may be displaced in shelters to make sure they get the dialysis they need."
"Because accessing patient records is an electronic transaction, HIE representatives don't have to be physically onsite during disasters. But during Hurricane Harvey last year, Thompson says representatives worked in shelters to assist with the transmission of data between onsite providers and patients. NC HIEA did not take similar action during Florence, but may explore becoming involved this way in the future.
Burris characterizes preparation for the storm as a "Herculean effort. Everyone pitched in and went above and beyond to make this happen. That was a really beautiful thing to witness. We also learned that when disasters strike, we have to continue to think ahead, refine our plans, and take the necessary steps for the next time."
Burris and Thompson shared lessons from their experience and ways HIEs, health systems, and providers can be better prepared for future disasters:
1. Integrate HIEs into disaster prepardness plans.
"We now want to be a part of not only what's going on with the health systems in our state, and how we may provide support to them, but also to be involved in the statewide disaster preparedness plan," says Burris. "We've already reached out and made those contacts."
2. Think beyond your immediate geographic region.
"Thinking beyond your core network for data exchange is key to disaster preparedness and planning," says Burris. Health systems should work with their HIE to ensure communication has been established to areas where patients will most likely relocate.
3. Establish and test electronic connections before a disaster occurs.
"If providers and HIEs or are not connected, then [patient] information can't be shared," says Thompson.
4. Know your HIE, and educate patients and providers.
Know which HIE serves your state or region. SHEIC members are listed here. Displaced patients may not realize their records may be available through an HIE. In addition, providers are not limited to health systems and physician practices. Ambulance services, skilled nursing facilities, urgent care centers, home health agencies, and public health departments are among the entities that may need access to information. They should be aware that information from your facility can be accessed this way.
5. Consider bi-directional communication to enhance patient care.
Establishing bi-directional communications is ideal to ensure that patient information is visible to providers assisting relocated patients, and after the patient returns home, also enables access to records of treatment that occurred offsite.
6. Plan for disaster expenses.
"Obviously, there are costs involved with setting up these connections, to the eHealth Exchange, and there's a cost to maintain them. The NC HIEA is state-funded, and we do not charge our participants for services at this time. We like to think of ourselves as more of a public utility, to allow health information to be exchanged to help improve patient care and improve the quality of care." While North Carolina has invested in the infrastructure to establish the last-minute connections for victims of Hurricane Florence, Burris says they will investigate "mechanisms by which the federal government might be able to help us recover some of the expenses for this, if there are some funds set aside for disasters."
HIEs Serve Roles Beyond Disasters
As the healthcare landscape transforms, HIEs may play a key role in providing data that fuels innovation. Many HIEs are examining how they can contribute to population health initiatives, identifying social determinants of health, and assisting with payer relations, among other efforts, says Thompson.
Mandy Roth is the innovations editor at HealthLeaders.
Integrate HIEs into disaster preparedness plans.
Think beyond your immediate geographic region.
Establish and test connections before disaster strikes.