This case study describes use of health information technology for enhanced team-based care and care coordination between primary care providers and infectious disease specialists for curing and eventually eliminating hepatitis C in West Virginia. This program, the West Virginia Hepatitis Academic Mentoring Partnership, aims to improve outcomes of West Virginians with chronic hepatitis C infection by training and supporting primary care providers to screen, diagnose, evaluate, treat, cure, and follow patients in the community rather than referring them to distant specialists with long wait times. This initiative supports health equity by increasing access to quality care in severely under-resourced rural areas. Primary care providers engage with hepatitis C experts in a web-based training and mentoring process, combined with informatics training in use of a customized Research Electronic Data Capture (REDCAP) platform for secure data tracking and bidirectional communication. This use of an informatics platform available to all partners supports shared decision-making between primary care providers and specialists, fostering a primary care learning network for improved hepatitis C care in West Virginia.
Keywords: health information technology, team-based care, hepatitis C, REDCap
The burden of chronic hepatitis C virus (HCV) infection in West Virginia is severe, with an extremely limited number of specialists located in urban centers and none in rural areas. The West Virginia Academic Mentoring Partnership (WVHAMP) aims to improve the health outcomes of West Virginians with HCV by training and supporting primary care providers (PCPs) and addiction care providers to screen, diagnose, evaluate, treat, and cure people in the community rather than referring patients to distant specialists with long wait times. This case study describes the role of WVHAMP in supporting team-based care for curing HCV through optimizing health information technology (HIT) designed to support real-time communication between providers and specialists, develop provider-level patient registries, and facilitate statewide surveillance for the goal of HCV elimination. This initiative supports equity in healthcare access for more rural, geographically, and socially isolated patients. This study was reviewed by the West Virginia University (WVU) Institutional Review Board and granted exempt status (Protocol number 2109406918).
HCV infection remains a significant public health problem globally despite recent advances in curative treatment.1-5 Untreated, HCV can cause cirrhosis, liver cancer, end-stage liver disease and death. Worldwide, approximately 71 million individuals have chronic HCV,6 with about half unaware they are infected.7 Deaths due to HCV are staggering, with approximately 339,000 deaths globally in 2016 and approximately 16,000 deaths in the US in 2018;8,9 in fact, deaths due to hepatitis C now outnumber deaths due to human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) and is the most common infectious cause of mortality in the US. The public health burden of HCV is especially pronounced in more rural, socioeconomically challenged areas that have HCV infection rates double that of urban areas.10 This substantial increase in infection rate is primarily due to transmission via shared use of equipment for injecting drugs.11-13 Furthermore, HCV diagnosis can be elusive, as it is frequently asymptomatic until it progresses to more advanced stages in approximately 80 percent of cases.14 Fortunately, combination antivirals can cure at least 95 percent of cases, significantly reducing the risk of associated morbidity and mortality.15-17 Access to treatment remains limited, however, especially in under-resourced rural areas, resulting in significant healthcare inequities.18 Increasing access to curative treatment is essential and not only benefits those who are infected but also limits ongoing transmission similar to the concept of “treatment as prevention” for HIV.19,20
West Virginia, the only state located entirely within Appalachia, is a critical area for innovative approaches to improving health equity regarding the treatment and cure of HCV. Approximately 45 percent of the state’s population lives in rural areas, and about 18 percent lives in poverty.21 As of 2017, West Virginia ranks first in the nation in acute HCV incidence, with 9.1 cases per 100,000 (Figure 1).22-24 HCV cases have been steadily increasing in West Virginia since 2010 at nine times the national average due to the prevalence of injection drug use, as West Virginia has had the highest US rate of fatal overdoses for the past decade—currently at 52.8 deaths per 100,000 population.25 Medicaid costs alone for treating HCV exceeded $27 million from 2014-2016.26 Rurality, mountainous terrain, lack of public transportation, and poverty all constitute significant obstacles to healthcare access. These challenges, coupled with a lack of available specialists to treat HCV, spur disparities in access to curative HCV treatment (Figure 2).27-29 Enhanced use of HIT for team-based care in the successful management of HCV is essential.
The goals of WVHAMP are to: 1) recruit and train PCPs and addiction care providers practicing in safety-net settings such as federally qualified health centers, community hospitals, and rural clinics in high-risk communities; 2) establish a primary care workforce throughout the state capable of curing persons with chronic HCV infection, including high-risk, low-resource rural settings, removing barriers to HCV care in the community; and 3) increase the number of West Virginians who are successfully linked to care and cured, thus advancing the goal of HCV elimination in West Virginia. Patients receive treatment in their own communities from familiar, trusted providers, overcoming transportation barriers to and costs associated with referral to care in urban settings and avoiding travel to distant specialists with long wait times for an appointment. Overall, this initiative is grounded in the need to improve access to HCV treatment and cure for individuals in high-risk, low-resource rural areas by removing long-standing barriers to care, including West Virginia Medicaid’s requirement that PCPs treat HCV under the guidance of a specialist.
WVHAMP,30,31 an adaptation of foundational efforts developed in Kentucky,32 aims to improve the health outcomes of West Virginians with chronic HCV infection by equipping safety-net primary care providers with web-based training and ongoing mentoring from infectious disease specialists to implement the “cascade of care” for HCV: from screening follow-up after cure. HCV cure is defined as a “sustained virologic response,” which means that a blood test done to detect the virus by a nucleic acid test is below the limit of detection 12 weeks after the patient completes treatment. This is termed SVR12. In terms of HIT and supportive analytics, WVHAMP is based on the use of a secure, HIPAA-compliant data system via Research Electronic Data Capture (REDCap)33 that allows for consult submission, data tracking, and bidirectional communication between local providers and specialists via internet access from any location. REDCap, originally developed and supported by the National Center for Advancing Translational Sciences, offers a secure platform for building and managing online data collection and analysis. A specialized REDCap database for WVHAMP was constructed around four key data domains: 1) patient demographics and health history; 2) provider location; 3) initial consultation between provider and specialist; and 4) follow-up consultation for determining treatment outcome. At each stage of the data collection process, the data system provides auto-notifications and real-time reporting to ensure dialogue among the health care team members for care coordination. Automated triggers in the data system notify specialists of the incoming consult and, in turn, notify the provider submitting the consult when the review has been completed. Turnaround time is under 24 hours for response to consults. By virtue of using the system, both provider- and healthcare-system level patient registries are created, and statewide surveillance is supported for all individuals treated for HCV through WVHAMP. This informatics-based approach better positions safety net clinics to engage in team-based care as per the National Committee for Quality Assurance Patient-Centered Medical Home model34 in which many primary care clinics are already engaged. The approach also supports evaluation of the effectiveness of the intervention through data collected at each interaction across the care team.
The multidisciplinary WVHAMP team includes health services researchers with expertise in data-informed quality improvement and practice-based research within the WVU School of Public Health Office of Health Services Research;35-39 infectious diseases clinicians in the WVU School of Medicine Departments of Medicine and Behavioral Medicine and Psychiatry with expertise in the infectious diseases associated with injection drug use;40-44 a nurse with expertise in HCV treatment and systems approaches to HCV healthcare delivery;45 and leadership from the West Virginia Rural Health Association that provides infrastructure to support WVHAMP.46 This study aims to describe the role of WVHAMP in supporting team-based care for curing HCV through optimizing HIT designed to support real-time communication between providers and specialists, develop provider-level patient registries, and facilitate statewide surveillance for the goal of HCV elimination.
To date, 97 PCPs and addiction care providers have been trained as WVHAMP scholars. Among those trained, more than half are from West Virginia counties designated as rural by the Health Resources and Services Administration Federal Office of Rural Health Policy, underscoring the benefit of WVHAMP to health equity in rural communities. From April 2020 through September 17, 2021, 308 consults have been submitted by 25 scholars for review and case discussion. Of the 92 patients who have reached the time point to assess cure or “SVR12” after completing therapy, 90 have achieved an SVR12 for a 97.8 percent cure rate. Ninety percent of patients achieving cure have been West Virginia Medicaid enrollees. This success is among providers who have not previously treated HCV. This success rate is similar to that achieved by specialists,47-49 demonstrating that WVHAMP provides a model for successful HCV care in rural communities and a step towards statewide HCV elimination. HIT-enhanced team-based care can improve equity in HCV treatment by facilitating cure in underserved rural areas.
This case study describes use of HIT for enhanced team-based care and care coordination via bidirectional communication and data sharing between PCPs and infectious diseases specialists for curing and eventually eliminating HCV in West Virginia. The WVHAMP program emphasis is on provider education and mentoring, supported with secure informatics tools for data tracking, communications, and shared decision-making. The success rate in curing HCV is on par with that of specialists, making this program a viable model for treatment and cure in other rural and underserved areas.
WVHAMP is aligned with the current healthcare landscape of the state, and the strength of the initiative and its potential for sustainability is bolstered by the following factors. First, Medicaid expansion through the Patient Protection and Affordable Care Act50 has increased healthcare coverage, allowing more patients the opportunity to access healthcare. Second, West Virginia has higher rates of primary care physicians, in particular family physicians, per capita than the national average who can be engaged in HCV care with appropriate ongoing education and support.51 Third, West Virginia has a well-established network of federally qualified health centers (FQHCs) that act as a primary care safety net for underserved communities. The 31 FQHCs in WV encompass nearly 300 locations and serve approximately one in four West Virginians.52 While knowledge of and experience with curative HCV therapy has been largely restricted to specialists (hepatologists, gastroenterologists, and infectious diseases physicians), their number is extremely limited statewide and concentrated in urban areas. WVHAMP provides an opportunity to overcome this disparity in access to HCV care. Lastly, West Virginia Medicaid requires PCPs who treat HCV to do so under specialist guidance and oversight. WVHAMP meets this need, while equipping PCPs with the knowledge and skills for successful HCV treatment. Given the success rate of WVHAMP scholars in curing HCV and the supportive environmental factors, it is reasonable to consider that this health informatics-supported team-based care model can not only be further disseminated within West Virginia but can also potentially serve as a model for other states aiming to improve health equity in treating individuals with HCV in underserved rural and urban areas.
WVHAMP has demonstrated that primary care and addiction care providers can deliver HCV treatment with the same success rate as specialists. HIT-supported team-based care is having a positive impact on the ability of rural PCPs to successfully treat and cure HCV in the community. In turn, patients can retain continuity in care at their medical homes and avoid the difficulties associated with referral to distant specialists. This use of an informatics platform available to all partners supports shared decision-making between primary care providers and specialists, fostering a primary care learning network for HCV treatment.
Special thanks to the West Virginia Rural Health Association, the Kentucky Rural Health Association, the West Virginia Department of Health and Human Resources – Bureau for Public Health, and the West Virginia Department of Health and Human Resources – Bureau for Medical Services Medicaid Program for their ongoing partnership and support in the work to eliminate hepatitis C virus.
1. Gastroenterology Advisor. “Hepatitis C Virus in Rural America: Tackling a Silent Epidemic.” March 2021. Available online at https://www.gastroenterologyadvisor.com/howtotreat/hepatitis-c-virus-in-rural-america-tackling-a-silent-epidemic/.
2. Tahan, V., Almashhrawi, A., Kahveci, A., Mutrux, R. and Ibdah, J. “Extension for Community Health Outcomes-hepatitis C: Small steps carve big footprints in the allocation of scarce resources for hepatitis C virus treatment to remote developing areas.” World Journal of Hepatology 8, no. 11 (2016): 509-512.
3. World Health Organization. “Hepatitis C Key Facts.” July 27, 2020. Available online at https://www.who.int/news-room/fact-sheets/detail/hepatitis-c.
4. Paul, D. III, Botre, N., Phillips, M., and Coustasse, A. “The Continuing Epidemic of Hepatitis C in the United States: The Case of West Virginia.” Proceedings of the Northeast Business & Economics Association 2018 Conference, Galloway, 2018.
5. Holtzman, D., Asher, A. and Schillie, S. “The Changing Epidemiology of Hepatitis C Virus Infection in the United States During the Years 2010 to 2018,” American Journal of Public Health 111, no. 5 (2021): 949–955.
6. World Health Organization. 2020.
7. Paul, D. III.
8. World Health Organization. 2020.
9. Centers for Disease Control and Prevention, “Hepatitis C Questions and Answers for the Public.” July 28, 2020. Available online at https://www.cdc.gov/hepatitis/hcv/cfaq.htm.
10. Gordon S. “Hepatitis C Virus Detection and Treatment in Rural Communities.” Gastroenterology & Hepatology 14, no. 12 (2018): 720-722.
11. World Health Organization. 2020.
12. Suryaprasad, A., White, J., Xu, F., Eichler B.-A., Hamilton, J., Patel, A., et al. “Emerging Epidemic of Hepatitis C Virus Infections among Young Nonurban Persons Who Inject Drugs in the United States, 2006-2012.” Clinical Infectious Diseases 59, no. 10 (2014): 1411-1419.
13. Zibbel, J., Asher, A., Patel, R., Kupronis, B., Iqbal, K., Ward, J., et al. “Increases in Acute Hepatis C Virus Infection Related to a Growing Opioid Epidemic and Associated Injection Drug Use, United States, 2004 to 2014.” American Journal of Public Health 108, no. 2 (2018): 175-181.
14. Stephens, D., Young, A., Havens, J. “Healthcare Contact and Treatment Uptake Following Hepatitis C Virus Screening and Counseling among Rural Appalachian People Who Use Drugs.” International Journal of Drug Policy 47 (2017): 86-94.
15. World Health Organization. 2020.
16. Holtzman, D.
17. Pham T., Keast, S., Farmer, K., Thompson, D., Rathbun, R, Nesser, N., et al. “Sustained Virologic Response and Costs Associated with Direct Acting Antivirals for Chronic Hepatitis C Infection in Oklahoma Medicaid.” Journal of Managed Care and Specialty Pharmacy 24, no. 7 (2018): 664-676.
18. World Health Organization. 2020.
19. Tenner, L., Melhado, T., Bobadilla, R., Turner, B., Morgan, R. “Texas Department of State Health Services. Health Facts Profiles, Texas, 2013.” Journal of Oncology Practice 15, no. 2 (2019): 61-63.
20. Moreno, G., Wang, M., Sánchez González, Y., Espinosa, O., Vania, D., Edlin, B., et al. “Value of Comprehensive HCV Treatment among Vulnerable, High-Risk Populations.” Value Health 20, no. 6 (2017): 736-744.
21. West Virginia Department of Health and Human Resources, Bureau for Public Health. “Hepatitis B and Hepatitis C Infection in West Virginia: 2016 Surveillance Summary.” Charleston, 2018.
22. West Virginia Department of Health and Human Resources, Bureau for Public Health. “West Virginia Viral Hepatitis Epidemiologic Profile 2017.” Charleston, 2017.
23. Centers for Disease Control and Prevention. “Viral Hepatitis - Statistics and Surveillance: Hepatitis C Tables.” November 13, 2019. Available online at: https://www.cdc.gov/hepatitis/statistics/2017surveillance/TablesFigures-HepC.htm.
24. West Virginia Department of Health and Human Resources, Bureau for Public Health - Office of Epidemiology and Prevention Services. “Hepatitis C.” 2021. Available online at https://oeps.wv.gov/hcv/pages/default.aspx.
25. Centers for Disease Control and Prevention. “2019 Drug Overdose Death Rates.” March 22, 2021. Available online at https://www.cdc.gov/drugoverdose/data/statedeaths/drug-overdose-death-2019.html.
26. West Virginia Department of Health and Human Resources, Bureau for Public Health. 2017.
27. Gastroenterology Advisor.
28. Tahan, V.
29. The Robert Graham Center. “West Virginia State Profile of Primary Care Workforce and Social Determinants of Health.” Washington, DC, 2017.
30. West Virginia Rural Health Association. “West Virginia Hepatitis Academic Mentoring Partnership.” 2021. Available online at: https://www.wvrha.org/wvhamp/.
31. West Virginia Rural Health Association. “West Virginia Rural Health Association.” 2021. Available online at https://www.wvrha.org/wvhamp/.
32. Cave, B., Sanders, K., Moser, S., Brawley, R., McCormick, T., and Espinosa, C. “Working Toward Elimination of Hepatitis C: The Kentucky Hepatitis Academic Mentorship Program.” Clinical Liver Disease 16, no. 3 (2020): 123-126.
33. National Institutes of Health, National Center for Advancing Translational Sciences. “REDCap.” 2021. Available online at https://ncats.nih.gov/expertise/clinical/redcap.
34. National Committee for Quality Assurance. “Patient-Centered Medical Home (PCMH).” 2021. Available online at https://www.ncqa.org/programs/health-care-providers-practices/patient-centered-medical-home-pcmh/.
35. Baus, A., Shawley-Brzoska, S., Wright, J., Carey, S., DeFrehn Berry, E., Ross, M., et al. “Informatics Supported Diabetes Prevention Programming in West Virginia.” Perspectives in Health Information Management Spring, (2021).
36. Baus, A., Coben, J., Zullig, K., Pollard, C., and Mullett, C. “An Electronic Health Record Data-driven Model for Identifying Older Adults at Risk of Unintentional Falls.” Perspectives in Health Information Management 14, Fall (2017): 1b.
37. Baus, A., Zullig, K., Long, D., Mullett, C, Pollard, C., Taylor, H., and Coben, J. “Developing Methods of Repurposing Electronic Health Record Data for Identification of Older Adults at Risk of Unintentional Falls.” Perspectives in Health Information Management13, Spring (2016): 1b.
38. Baus, A., Hendryx, M., and Pollard, C. “Identifying Patients with Hypertension: A Case for Auditing Electronic Health Record Data.” Perspectives in Health Information Management 9, Spring (2012): 1-15.
39. Baus, A., Wright, L., Kennedy-Rea, S., Conn, M.E., Eason, S., Boatman, D, et al. “Leveraging Electronic Health Records Data for Enhanced Colorectal Cancer Screening Efforts.” Journal of Appalachian Health 2, no. 4 (2020): 53-63.
40. Rich, K., Bia, J., Altice, F., and Feinberg, J. “Integrated Models of Care for Individuals with Opioid Use Disorder: How Do We Prevent HIV and HCV?” Current HIV/AIDS Report 15 (2018): 266–275.
41. Keeshin, S. and Feinberg, J. “Endocarditis as a Marker for New Epidemics of Injection Drug Use.” The American Journal of the Medical Sciences 352, no. 6 (2016): 609-614.
42. Sherman, K., Guedj, J., Shata, M., Blackard, J., Rouster, S., Castro, et al. “Modulation of HCV Replication After Combination Antiretroviral Therapy in HCV/HIV Co-Infected Patients.” Science Translational Medicine 6, no. 246 (2014): 246ra98.
43. Litwin, A., Jost, J., Wagner, K., Heo, M., Karasz, A., Feinberg, J., et al. “Rationale and Design of a Randomized Pragmatic Trial of Patient-Centered Models of Hepatitis C Treatment for People Who Inject Drugs: The HERO Study.” Contemporary Clinical Trials 87 (2019): 105859.
44. Cafardi, J., and Feinberg, J. “Chapter 2 - The Case of Scott County: Injection Drug Use and the HIV and Hepatitis C Virus Outbreak.” The Opioid Epidemic and Infectious Diseases, Elsevier (2021): 11-24.
45. Cave, B.
46. West Virginia Rural Health Association. 2021.
47. Kwo, P., Puenpatom, A., Zhang, Z., Hui, S., Kelley, A., and Muschi, D. “Initial Uptake, Time to Treatment, and Real-World Effectiveness of All-Oral Direct-Acting Antivirals for Hepatitis C Virus Infection in the United States: A Retrospective Cohort Analysis.” PloS One 14, no. 8 (2019): e0218759.
48. Alimohammadi, A., Holeksa, J., Thiam, A., Truong, D., Conway, B. “Real-world Efficacy of Direct-Acting Antiviral Therapy for HCV Infection Affecting People Who Inject Drugs Delivered in a Multidisciplinary Setting.” Open Forum Infectious Diseases 5, no.6, (2018): ofy120.
49. Carter, M. “DAAs Achieve Excellent Outcomes in Real-World Settings.” 2016. Available online at https://www.aidsmap.com/news/apr-2016/daas-achieve-excellent-outcomes-real-world-settings.
50. The Robert Graham Center.
52. West Virginia Primary Care Association. “What Makes a Community Health Center.” 2021. Available online at https://www.wvpca.org/content.asp?contentid=193.