This is a guide to providing care navigation to enhance linkage to care for hepatitis C virus (HCV) infection. This guide provides an overview of how HCV care navigation works and how you can implement it in your service setting. We’ll give you some practical tools, tips, and resources and provide insights into the barriers you may face and how you might be able to overcome these barriers.
It is important to note that these resources may also apply to varying forms of health navigation in non-clinical settings. The implementation or scaling up of HCV care navigation is country and/or region-specific and the information we have provided is of a general nature. HCV care navigation may also be referred to as patient navigation, or HCV community navigation, depending on the setting.
The authors and reviewers of this guide include people with lived and living experience of drug use or viral hepatitis, healthcare practitioners, researchers, laboratory scientists, policymakers and other service providers globally. This guide is part of our Intervention Toolkit which profiles innovative models of HCV care and offers guidance on how to set up different interventions for HCV in your service.
Many people affected by hepatitis C face multiple barriers in accessing mainstream health services. These may include previous negative experiences, stigma and discrimination, cost, absence of cultural safety, and others.
HCV care navigation is a community-based intervention that helps people overcome barriers to care and promotes access to timely diagnosis and treatment of hepatitis C. More broadly, care navigation is used to support people at risk of or living with viral hepatitis, cancer, HIV, diabetes and other chronic diseases. Experiences with homelessness or poverty can be a primary reason for seeking care coordination or navigation.
HCV care navigators may have a lived experience of drug use, direct experience with HCV infection or treatment, accessing HCV testing, and/or experiences being at risk of HCV such as injection drug use. HCV care navigators are also sometimes referred to as patient coordinators and linkage to care coordinators. Although the role may be referred to in different ways, their goal is to support patients to navigate the healthcare system to complete testing and receive appropriate medical care.
Many other roles within the health system also incorporate navigation, for example, some nurses, social workers, outreach workers or case managers may undertake patient navigation in their everyday roles.
With HCV care navigation, the navigator works with people at risk of HCV to facilitate completion of the testing process and, if positive, they support connecting the person to a treatment provider, supporting them to start and complete treatment, to plan post-treatment strategies to prevent re-infection and to retain engagement with a preferred health service for on-going testing and HCV risk management.
The navigator also works to connect people with other health and social services, helping to build the capacity of people to manage their own care and improve their overall health and wellness. Navigators may provide some, or all of, the following services:
- Provision of health education about HCV (e.g. what it is, transmission, prevention, testing, treatment and cure)
- Facilitate referrals and then coordinate appointments for initial screening and confirmatory tests. Navigators may also be trained to administer point-of-care testing for HCV or dried blood spot (DBS) testing for HCV
- Conduct brief assessments to identify patient needs and provide service referrals or linkage to other services to support patients and their readiness for care (e.g. health insurance coverage, transportation, housing status, food access, social support, mental health, drug treatment, and harm reduction programs). Navigators refer and connect clients to these health and social services
- Coordinate care appointments and sometimes accompany the person to appointments (e.g. first medical visit with provider, testing and medical evaluation for treatment, treatment start and completion, and sustained virologic response (SVR) test 12 weeks post-treatment)
- Coordinate planning for post-treatment management of re-infection risk – harm reduction education, peer support, ongoing engagement with preferred health/social/harm reduction services and regular HCV testing
- Coordinate medication/pharmacy process including directing the client to low-cost or free options, completing paperwork needed to cover the costs of the medications (including applications for reimbursement of medications), and logistics related to medication pick up. This may include liaising with pharmacists to provide low-barrier ways to provide medication (such as daily/weekly dispensing and delivery). Where feasible, the care navigator may transport medication if mobility and access to transport is an issue
- Support patient attendance at appointments by sending reminders and accompanying them if needed, using a range of acceptable methods such as phone calls, text messaging, appointment cards, social media messaging platforms, etc
- Develop an ‘after-cure plan’ to prevent and maintain liver health, particularly for patients with cirrhosis to complete annual liver cancer screening. This may include reinforcement of messaging and relinkage to harm reduction services e.g needle and syringe service programs or drug treatment, as appropriate.
- Facilitate recording of information in clinical records, recording interventions and services provided
- Maintain confidentiality through all service delivery.
Peers may work with navigators to support linkage and retention in care through referrals and close collaboration, meeting regularly to discuss patients. A comprehensive list of navigator activities can be found in the Hep C Community Navigation Toolkit, developed by the National Alliance of State and Territorial Aids Directors (NASTAD).
- Navigators build relationships with clients by providing individualised support and resources to meet their evolving needs
- Navigators can help reduce the time to diagnosis and treatment for HCV and removes barriers to care
- Improved client knowledge around HCV prevention, transmission, testing and treatment through the provision of health education and promotion
- Supports clients to make informed treatment decisions and connect them with appropriate programs and services
- Reduce health disparities through care coordination and building trust between clients and the health system
- Support the continuity of care, as well as care coverage, across often underserved populations
- Engagement in HCV can serve as a springboard to addressing broader health concerns
How to set up a HCV care navigation program in your service
*We have included some key areas of program planning and implementation. We encourage you to also review the Program Guide in the NASTAD Hep C Community Navigation Model and Toolkit
Circumstances that present barriers to timely care for people living with HCV include unstable housing, untreated mental health issues, lack of comprehensive health care and other competing priorities. This is why it is important for navigators to ask questions and gain consent in their initial meeting with the person. Some examples of those questions are:
- Do you have a phone, email or social media account where we can message you?
- Can we call a family member or friend if we need to contact you? Do you have a mailing address?
- Where do you usually hang out, are there any services nearby that you access regularly?
Standardised intake forms should include a section with a list of the client’s preferred methods of contact, mobile phone, email, postal address, friend, family member, drug treatment program, harm reduction service, other health services, etc.
Navigation services can be funded through local government special initiatives, grants from national government agencies and other funding sources such as pharmaceutical companies. If funds don’t allow for a robust internal team (people who carry out testing, navigator, navigator supervisor, data manager, behavioural health/ drug treatment provider, medical provider etc.) consider utilising your referral network to outsource services.
In many jurisdictions, there is funding for services related to HIV/AIDS and for the overdose crisis. If that is the case, consider creating hybrid navigator positions that would work on HIV/AIDS, PEP/PREP and/or Harm Reduction and HCV. It may be possible to link in with existing health promotion programs and other local agencies.
When possible, the navigator should visit all referral sites and become familiar with the medical and service settings and staff. The goal is to find locations and staff who are affirming to all clients including but not limited to: LGBTQI+, people who use drugs, people from culturally or linguistically diverse communities, indigenous communities, and people who are unstably housed or who were formerly in prison.
Many people do not seek medical care because they have felt stigmatised and judged by medical providers and other health care workers in the past. It is critical to acknowledge client concerns and past experiences and to determine which service providers are most appropriate. In some cases, accompanying clients to medical appointments will be necessary to advocate for their needs and may help them feel more comfortable getting care.
Training on how to tackle stigma and discrimination should also be provided.
Due to the price of oral direct-acting antivirals (DAAs), there continue to be restrictions on who may have oral DAA therapies covered or paid for by insurance in many parts of the world, and restrictions related to re-treatment eligibility. It is important that your organisation is familiar with any barriers to HCV coverage and potential strategies to address these barriers.
Some countries may look to provide treatment through their ministry of health or other cost-sharing programs.
Pharmaceutical companies and non-profit organizations that assist with co-payments and medication costs can be used, in some cases, to support people who are uninsured or underinsured.
What is ‘accompaniment’?
This is where a client is supported to attend appointments. Depending on the level of support a person needs, the navigator might accompany the person, or arrange for accompaniment, to all or some appointments. If the client frequently misses appointments, has trouble understanding the medical provider, is anxious about appointments or would have trouble navigating the transportation needed to attend a medical appointment — the navigator can accompany them. This can be an important time to build a trusting relationship and to assure the medical provider that the person has support to get treated for HCV.
What kind of clinical provider education is needed?
Clinical providers working with navigators need to understand the role and value that navigators can bring and how the team works together. They also need to understand the unique needs of the populations at highest risk for HCV which include people who use drugs, history of incarceration and/or homelessness. Clinical provider training might also be needed to educate providers on the needs of certain populations.
How can incentives be incorporated into HCV care navigation?
If possible, based on your available resources, incentives such as transportation cards or goodie bags, tee shirts, gift cards, cash, or other supports can be used to; motivate testing completion (to get tested or to come back for test results); or as a congratulatory reward for attending the first medical appointment, starting treatment; and/or for completing lab tests at 12 weeks or other time points after treatment. Where jurisdictions and funding allow, a choice of incentives (mobile phone credit, travel cards, supermarket vouchers) should be considered to provide immediate assistance to clients and to support meeting the milestones of their treatment journey. If funds for incentives are limited, programs can choose which treatment milestones to prioritise (e.g. starting treatment, end of treatment or lab test 12 weeks after treatment ends).
Got a question?
Contact us and we’ll do our best to help.
Top tips for implementing HCV care navigation in your service
Create a small working group inclusive of those with lived and living experience to help develop the project
Get management on board from the outset. Show examples of where it has worked elsewhere
Work out a budget and identify what other supports are needed (e.g. policy, management).
Training is critical – set up a comprehensive training program for navigators and run trainings regularly to so training is up to date.
Manage people and culture – for a collaborative practice to be established, a good working relationship between the navigator and the care team is required.
Stay in regular communication with other local organisations to build stronger referral networks and support troubleshooting.
Write up your experience and share it with others.
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