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NVHR Program Survey
Executive Summary
Overview
Reaching the Baby Boomer Population
Challenges Faced
NVHR’s Response
Conclusion
Executive Summary
NVHR’s Hepatitis C Program Survey received in-depth responses from 21 individuals representing organizations in fourteen states, including public health departments, community-based organizations, and advocacy coalitions addressing viral hepatitis, harm reduction, and addiction/recovery services. Respondents described successful approaches regarding HCV screening for Baby Boomers, identified obstacles facing these approaches, highlighted areas for expansion, and recommended future materials to strengthen their resources. NVHR connected respondents to existing resources and created new materials in response to their requests.
Overview
NVHR’s Hepatitis C Program Survey received 21 responses from respondents representing fourteen states. Two of these respondents represented organizations with an international scope. Along with geographic diversity, the respondents’ organizations reflected diversity in the form of public health departments, community-based organizations, and advocacy coalitions and addressed a variety of issues, including hepatitis B, hepatitis C, harm reduction, and addiction/recovery services.
Respondents’ organization covered a variety of services, including patient education (90%), general public education (80%), advocacy and policy change (76%) and patient support (71%). Respondents also worked in provider training (57%), specialty medical care (14%), and primary care (9%).
With regard to the community served by respondents’ organizations, a majority of survey respondents indicated that they reach people who are uninsured (95%), people who are currently or were formerly incarcerated (85%), people co-infected with HIV/HCV (85%), and people experiencing homelessness or unstable housing (80%). Respondents’ organizations also reached people in the transgender community (76%), the men who have sex with men (MSM)community (71%), African Americans (61%), the Asian American and Pacific Islander (AAPI) community (61%), medical providers (61%), Baby Boomers (57%), and Latinos (52%).
In terms of working with medical providers, respondents indicated varying methods to connect with providers. Some utilized educational events, lectures, and conferences to facilitate in-person contact with medical providers. Some organizations favored telemedicine, email, and phone as primary contact methods. Other organizations had a medical advisory board, steering committees, or facilitated grand rounds to foster long-term relationships between providers and their organizations. Respondents indicated that individual relationship-building provided the most effective method of interacting with providers, and that establishing a provider champion in the field eased their ability to provide services. Respondents also referenced using services such as discounted HCV labs and HCV treatment patient assistance programs (PAPs)as the most effective method to interact with medical providers.
Reaching the Baby Boomer Population
Respondents described a variety of approaches to raise awareness for HCV Baby Boomer testing in their community. Some mentioned that their electronic medical records (EMR) have prompts to indicate a patient’s Baby Boomer status to a provider. Others indicated that their screening efforts, outreach testing, and education was specifically aimed at collecting risk-based data regarding Baby Boomers and others. Some organizations participated in health fairs, social networking, websites, and blogs to engage with the community. Others referenced partnerships with pharmacies to engage clients and conduct rapid HCV testing, as well as holding support groups for people living with hepatitis C.
Lastly, some respondents indicated activities on a political level, such as providing testimony for committees, congressional delegations, and advocating to hepatitis C testing legislation.
NVHR provides a variety of resources for communities to use regarding HCV Baby Boomer testing, including information on creating EMR prompts, resources for patients, coding and billing information, and provider training. NVHR’s programmatic work also involves convening workgroups of pharmacists and physicians to discuss their roles in HCV testing and linkage to care. NVHR provides regular communication with its member organizations about CDC resources and campaign materials, as well as opportunities through conference calls, webinars, and listservs to share best practices and lessons learned for community-based awareness and testing efforts.
With regard to receiving technical assistance and capacity building needs for HCV awareness and Baby Boomer testing, organizations were interested in receivingprovider education tools, handouts, and training materials (57%), patient education tools, handouts, and training materials (52%), advocacy within medical societies (52%), template press releases, advocacy materials, and letters to the editor (42%). Others would like to receive sample public service announcements (38%), educational webinars (33%), printed CDC materials (33%), advice on developing HCV support groups (23%), and assistance with testing day events (23%).
Challenges Faced
Respondents described several challenges in their experience working with providers to increase HCV testing and linkage to care. Several respondents reported that it was very difficult to engage providers in HCV care, citing lack of funding and low reimbursement for HCV care as deterrents for primary care providers. Other respondents indicated that working with new providers was challenging and required an investment in time, consistent relationship-building, and education around hepatitis C.
NVHR’s programmatic initiatives support community groups’ efforts to engage with providers surrounding HCV testing and linkage to care. NVHR has offered several educational webinars, where participants have an opportunity to ask questions of providers about their work. NVHR has also developed and shared materials that community groups can use to work with providers concerning HCV testing, billing and coding resources, and best practices for programs. NVHR serves as a convener to bring providers into discussions concerning HCV Baby Boomer testing, as demonstrated by the engagement of several medical providers in conversation with community group members in quarterly working group calls and email discussions. NVHR has helped to connect medical providers with community groups and local and state-level advocacy efforts. NVHR has also leveraged the expertise of medical providers as reviewers of NVHR fact sheets, to ensure medical accuracy in materials developed for lay audiences.
Currently, respondents’ organizations provide HCV education materials (85%), HCV community outreach and education (80%), patient navigation and/or linkage to care (85%), and referrals for chronic HCV treatment (71%). Others provide support groups (57%), HCV blood draw testing (47%), and HCV treatment (23%).
NVHR’s Response
NVHR’s program is responsive to the needs outlined by respondents. Our website has many existing materials and resources for organizations seeking to reach out to Baby Boomers, including guidance on implementing EMR prompts, information for patients, provider education, and fact sheets. NVHR regularly provides updates and shares information about CDC materials, and is planning a webinar next month that will include information about the latest resources from CDC. NVHR has also organized a conference call for community groups to share information and develop best practices and strategies in regard to testing day events. NVHR continues to identify and develop new resources including templates for programs, fact sheets, and sample EMR screening prompt configurations.
With regard to EMR prompts, a third of respondents are either currently or planning to work with healthcare systems to implement prompts. 14% of respondentsindicated that they currently use EMR prompts and 19% expressed interest in the use of EMR prompts if given assistance. NVHR currently provides a webpage with resources detailing how to implement EMR prompts, and consistently expands and updates information for different EMR systems.
In response to questions about barriers to HCV testing and linkage to care in their communities, program respondents indicated several barriers to care, the most significant of which were: drug use/drug user-related stigma (71%), limited treatment access (66%), lack of HCV awareness (61%) and lack of health care coverage (47%).Others responded that cost of medical services (seems like there should be a % here, as cost and stigma are separate issues?) and HCV-related stigma (38%) represented additional barriers to care for patients in their communities.
NVHR’s program work is focused on reducing health disparities in disproportionately affected communities, and many group webinar topics have reflected this initiative. Through conference calls, webinars, and website maintenance, the program continues to provide education and materials for organizations facing these barriers. In the third year of its program, NVHR has continued to deepen its focus on disproportionately impacted communities within the birth cohort as well as other at risk communities. NVHR will continue to develop programming that is responsive to the barriers outlined by our community respondents.
NVHR asked about the adequacy of existing HCV community resources. Many respondents felt that local resources regarding hepatitis C testing and linkage to care were either fair/inadequate. For access to free or reduced cost HCV screening, 52% of respondents felt that local resources were fair/inadequate. For resources for appropriate follow-up medical care for people who were infected, 71% of respondents felt that local resources were fair/inadequate. Lastly, with regard to resources for uninsured individuals to get follow-up medical care for HCV, 76% of respondents felt that local resources were fair/inadequate.
A slight majority respondents found HCV education resources to be available and of good quality with 52% of respondents reporting that resources were good, while nearly 47% said theirs were fair/inadequate.
NVHR continues to identify resources to build capacity within communities to increase HCV screening and linkage to care. NVHR has connected organizations to share strategies and resources, and continue to update the materials on our website to address gaps and connect organizations with coalitions in their states to improve local resources.
Respondents indicated a wide range of needs. They made requests for assistance with implementing best practices for HCV screening and linkage to care, conducting HCV screening and linkage to care program evaluation, building and maintaining local coalitions, developing and implementing community-based programming, and developing HCV educational resources. Respondents suggested an interest in receiving assistance in a variety of forms:peer-to-peer programming, in-person meetings, group webinars, a series of individualized one-on-one phone calls, toolkits, and group conference calls.
Half of respondents requested support about HCV testing coverage, coding, and billing, as well as support regarding Medicaid/Medicare reimbursements. Information on coverage, coding, and billing is currently available on NVHR’s website and is consistently updated.
Conclusion
NVHR will continue to offer programming and materials that are responsive to the requests outlined and offersmany resources to respond to these needs. NVHR’s Program hosts quarterly working group calls, hosts regular webinars, maintains and updates website resources on HCV screening and linkage to care, and provides individual coaching and networking to coalition members.