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Ten Years. One Team, Hundreds of Communities

Ten Years Graphic

WRITTEN BY: STACEY ELZA
GRAPHICS BY: GRAHAM CURRY

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If every resident of Clendenin gathered to watch a match at WVU’s Dick Dlesk Soccer Stadium, there would still be 650 seats to spare. The town’s population of about 1,000 isn’t enough to sustain its own mall, movie theater or Walmart. When flooding destroyed Clendenin’s only grocery store in 2016, no one replaced it.

But the rurality of Clendenin and the region around it haven’t been enough to isolate them from the increase in hepatitis C across the nation. The Centers for Disease Control and Prevention estimates that in 2011, there were about 17,100 acute hepatitis C infections in the United States. By 2018, the estimate had almost tripled, to 50,300.

The patients at Cabin Creek Health Systems, which operates clinics in Clendenin and the surrounding area, reflected that trend. 

"We look at some of our data, and what we saw were many more patients starting to test positive for hepatitis C,” said Amber Crist, Cabin Creek’s CEO. “Our medical providers were really struggling with coming up with what to do. How do you manage patients with hepatitis C? What about patients who would not be open to being referred to

an infectious-disease specialist — even in Charleston, which is about a 20-to-30- minute drive from all of our sites, at best?”

Hepatitis C is a bloodborne, viral infection that can cause serious liver damage. Injecting drugs makes someone more likely to contract it, which means it’s bound up with the opioid epidemic.

Crist and her colleagues wanted to address the problem. In 2016, they partnered with the West Virginia Clinical and Translational Science Institute (WVCTSI), and with funding and support from the Claude Worthington Benedum Foundation and the West Virginia Primary Care Association, WVCTSI Project ECHO was born.

The collaboration connects medical specialists in one place with healthcare professionals elsewhere. Through regular, virtual meetings, the medical specialists share their in-depth knowledge with primary care providers in even the most rural areas, making it possible for more patients to get cutting-edge care, even as they continue to visit the same local practitioners.

“We didn’t treat hepatitis C before ECHO,” Crist said. “We couldn’t. We had to refer patients out to an infectious disease specialist.” 

Now that Cabin Creek’s nurse practitioners and physician’s assistants attend Project ECHO meetings, they can prescribe hepatitis C medications — medications that, previously, only specialists could sign off on.

And since the initiation of the hepatitis C ECHO in 2016, the partnership has “been a freight train,” said Jay Mason, who directs community programs and WVCTSI Project ECHO. “It’s really picked up steam.”

Today, multiple ECHO projects address specialty care in heart failure, endocrinology, mental health and substance use disorder — among other subjects important to West Virginians’ health — and serve more than 1,200 healthcare providers in 21 states.

“It’s just been really amazing to see WVCTSI take the seed, and now it’s this amazing tree,” Crist said.

Building with many windows

Clendenin Health Center, located at Clendenin Middle, where community members can receive care and treatment. 

Healing the State, One West Virginian at a Time

Project ECHO typifies WVCTSI’s multifaceted pursuit of the mission it established at the outset: building research infrastructure and capacity to improve the health of West Virginians and Appalachians.

WVCTSI got its start in 2012 with a $19.6-million grant from the National Institutes of Health. Several West Virginia organizations provided matching funds, bringing the total amount to $53.1 million. 

“One of the reasons WVCTSI has been useful to West Virginia is that we focus on research relevant to common health issues in West Virginia,” said
Dr. Sally Hodder, WVCTSI director
and associate vice president of clinical and translational science for WVU Health Sciences. Mortality rates in rural America exceed urban rates, and the gap has accelerated since 1999.

“I grew up in a little Appalachian town called New Philadelphia in Ohio,” Hodder said. “I feel that it is critically important that we find solutions to vexing health problems affecting persons living in Appalachia and especially West Virginians. WVCTSI facilitates research focusing on rural health and draws together various institutions that impact healthcare, coordinating and providing synergies that otherwise might not be there.”

Those synergies nurture health research that goes beyond the theoretical and achieves practical applications in healthcare settings — especially rural ones.

WVCTSI promotes meaningful research in various ways: funding research, mentoring investigators, facilitating clinical trials from development to completion, providing innovative data analytics and engaging community members across the state. Although headquartered at WVU, WVCTSI is a statewide organization serving all of West Virginia, and researchers from around the world have been involved in its work.

That love shines through in the ways WVCTSI interacts with its partners, whether they live in a city (like Charleston) that’s big enough to attract a Walmart Supercenter, or a small town (like Clendenin) where the only local place to buy groceries is a Dollar General.

As WVCTSI celebrates its 10th anniversary, it’s affecting more communities than ever. Here are snapshots that illustrate how WVCTSI has encouraged health research to flower.

Breathing Easier: Coal Miners’ Clinical Trial 

West Virginia has the highest number of coal-mine employees in the nation, so the new, rapidly progressive form of pneumoconiosis that’s threatening coal workers looms large over the state.

The evolution of mining practices has given rise to the disease by causing smaller particles to be dispersed during mining operations. In collaboration with Dr. David Weissman of the National Institute for Occupational Safety and Health, WVCTSI facilitated the development of a protocol to study the efficacy and safety of nintedanib, a tyrosine kinase inhibitor, in miners with progressive massive fibrosis of the lung as a result of this condition. Dr. Rahul Sangani, a WVU Medicine pulmonary and critical care physician, is the lead investigator. Financial support from Boehringer Ingelheim Pharmaceutical Inc. has been obtained, and the study seeks to enroll 160 miners with this new form of pneumoconiosis.

How, Why and in Whom COVID Lingers: RECOVER Initiative 

WVCTSI is facilitating an investigation into one of the biggest and most vexing mysteries of COVID-19: its long-term effects. WVCTSI is one of 15 centers chosen by the National Heart, Lung and Blood Institute to serve as a “hub,” managing 11 other sites from Maine to Hawaii to enroll adults in a study of long COVID

The study is part of NIH’s Researching COVID to Enhance Recovery—or RECOVER—Initiative. Over four years, scientists will study tens of thousands of participants nationwide to better understand the incidence and symptoms of long COVID and to define the biologic mechanisms that underlie it.

West Virginia’s involvement is important because of what it can reveal about COVID’s impact on rural populations. For instance, the care that long-COVID requires may tax rural areas’ already overburdened clinics and hospitals, Hodder said, and obesity and diabetes — both prevalent in West Virginia — have been implicated in a higher long-COVID risk. 

Underserved but Not Overlooked: Practice-Based Research Network

The West Virginia Practice-Based Research Network (WVPBRN), originally created by the WVCTSI in 2013 as the first practice-based research network in the state, is comprised of 129 clinical sites. Most WVPBRN sites are federally qualified health centers or rural health clinics, often in remote areas. That’s significant when you consider that — as the American Medical Association reports — 15% of the U.S. population lives in rural areas, but only 12% of primary care physicians and 8% of medical specialists work there.

WVPBRN provides a platform to engage patients, clinics, clinicians and communities at the most localized level to promote increased community trust and participation in research.

An example of the Network’s impact is a demonstration of the usefulness of diabetic retinal photography in primary care offices; the WVPBRN study contributed to third-party payers covering the service. 

Driving Innovation: Mobile Clinical Trials Unit

By transforming a 39-foot Winnebago into a medical clinic on wheels, WVCTSI will bring important clinical trials and follow-up visits to rural residents across West Virginia. With a $350,000 grant from NIH, WVCTSI is equipping the Winnebago with all the supplies researchers need for on-site clinical trials. The result will be a mobile clinical trials unit, complete with a reception area, two exam rooms, a bathroom and a lab area for drawing and processing patient samples.

Outfitting the mobile unit with a diesel engine will ensure that it can reach mountainous, rural sites and bring groundbreaking trials to West Virginia’s most remote areas. Investigators throughout the state — including those involved with WVPBRN — may request the mobile unit to recruit or visit study participants. Although WVPBRN’s investigators have been extraordinarily productive, limited clinic space and a shortage of research staff have curtailed their participation in trials. The mobile unit will provide the space and staff they lack by spending part of its scheduled time conducting clinical trials at WVPBRN sites.

Broad Reach, Local Relevance: Real-World Data

Early in the inception of WVCTSI and in collaboration with WVU Medicine, the Integrated Data Repository (IDR) was created. The IDR now includes de-identified data from the electronic health records of more than 400 million patients and serves as an important source for several retrospective data projects.

A recent example that illustrates the usefulness of this readily available resource is the establishment in 2020 of a database containing electronic health record data on COVID-infected persons. Given the success of the local database, WVCTSI was funded by the NIH to lead seven other states with large, underserved populations to join the National COVID Cohort Collaborative (N3C), which contains data on more than 4.5 million COVID patients for 74 centers across the United States.

The Enclave “only gets de-identified information,” said Wes Kimble, the director of research analytics for WVCTSI. “And before researchers can view even the de-identified information, oversight and compliance committees must grant them access.”

Important work resulting from WVCTSI’s involvement in the N3C is demonstration that COVID mortality among rural patients is 40 percent greater than their urban counterparts, and that is after adjustment for multiple factors including age and co-morbidities.

“When people think of research, images of labs and beakers often come to mind,” Hodder said. “I don’t believe they understand just how important patient outcomes data are to biomedical research. Relevant patient outcomes data may suggest potential treatments that can then be further studied.”

Bringing West Virginia Cutting-Edge Clinical Trials 

Rural populations are consistently underrepresented in clinical trials, and findings from research focusing on urban populations don’t always translate well to rural populations. In 2017, WVCTSI created the Clinical Trials Center of Excellence at WVU to facilitate participant safety, regulatory compliance and operational efficiency. Specific offerings include training, clinical-trial finance guidance, study coordinators availability, quality and compliance audits and a clinical-trials- management system.

“In the last 10 years, regulatory requirements for clinical trials have increased,” Hodder
said. “The Clinical Trial Center of Excellence provides systems and services that help ensure that clinical trials are compliant with national regulations.”

Since the launch of the Center of Excellence, WVU has increased clinical trials availability to West Virginians. From 2012 to 2017 — before the Center opened — WVU had 34 active clinical trials, enrolling 236 participants. Since then, WVU has had 88 active clinical trials, with 2,356 participants.

From Seed to Tree to Forest

In the years to come, WVU is poised to offer even more clinical trials as WVCTSI continues to facilitate their development, funding and execution. 

Likewise, scientific inquiry and the resulting discoveries will reach more communities as WVCTSI keeps pursuing its goal: making West Virginia — and all of Appalachia — a healthier place to live, work and thrive. 

By taking communities’ needs to heart, WVCTSI is ready to turn its “amazing tree” of innovation, outreach and service into a vibrant forest. More scientists will receive assistance as
they plan and conduct studies. More clinicians will get the support they need to provide optimal care for their patients. And more West Virginians and Appalachians will benefit from new ways to prevent, postpone and treat vexing medical conditions.