Hepatitis C Care Navigation

Introduction 

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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.

What is HCV care navigation? 

Definition

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.

How does it work?

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). 

There are many benefits of HCV care navigation and ways in which it helps mitigate and overcome the barriers people may face to accessing care. Some of these include:  

  • 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

Good practice examples

How to guide*

How to set up a HCV care navigation program in your service

This is a How-To Guide and provides some suggestions for how to set up a HCV care navigation program in your service setting. The suggestions below may be helpful as a guide but are not prescriptive- it is important to create a program which can be feasibly implemented in the context of your service and available resources. 

Scoping: Before launching a HCV care navigation program, and on an annual basis afterwards, conduct a community assessment to determine the needs of your population. Use the information you gather to advocate for funding and to develop a navigation program that is culturally and linguistically tailored to the population you serve. This assessment should inform program design and adaptation to better support target populations.

Record review: You can start by reviewing your own client records to find out the number of people who have not been tested, the number of people known to have HCV who have not been treated and cured, and their characteristics by gender, age, language, etc. Ask staff and clients in your organisation about any challenges they have experienced when trying to complete testing and linkage to care for clients with HCV.

Data: Contact your local health department, ministry of health or other relevant authority for available data on the incidence and prevalence of HCV in your catchment area. 

Policies and guidelines: Identify the national and local recommendations for HCV screening and treatment, and any pending policy changes. This can help determine areas for improvement in current workflows and can help you set milestones for continued improvement in care.

Stakeholder mapping: Conduct a stakeholder mapping exercise to locate critical service providers in your area, such as:

  • HCV medical providers and hepatologists
  • Peer-based organisations
  • Needle & Syringe service programs
  • Supervised consumption services
  • Drug treatment programs
  • Specialist pharmacies
  • Food pantries and soup kitchens
  • Homeless service organizations and shelters
  • Mental health services
  • Community groups and/or voluntary groups
  • Adult education and professional development organizations;
  • Lastly, identify your government representatives, community advocates and other key opinion leaders

Infrastructure: Navigators will require access to the necessary IT infrastructure, including computers or laptops, any required software and computer functionality, and program databases. They will need access to client charts or electronic health records, secure storage files and the appropriate mechanisms for communication (email accounts, smartphones etc). 

Organisational support: Any organisation seeking to set up a HCV care navigation program should consider how navigators will be supported and under what frameworks. A supervisor should be appointed to oversee and discuss cases, troubleshoot challenges and celebrate achievements. Navigators should be supported to understand organisational policies and procedures, for example, the parameters around home visits. 

 

Helpful resources:

Qualifications: These may vary but it is critical that navigators have experience with and comfort working with the population the program intends to serve. Some programs require navigators to have a college education and/or professional experience that includes working with at-risk populations while others have as their main requirement a lived experience of substance use and or HCV (peer navigation).

Experiential expertise: Ideally, a candidate will have a strong understanding of harm reduction and past experience providing low-threshold services to people who use drugs; a commitment to supporting marginalised communities to advocate for their healthcare and other services they need; and if applicable, be multilingual. Most programs seek to recruit Navigators with lived/living experience and/or who live in the communities where they will be working.

Identify existing, or develop, client education materials: These should be easy to understand, actionable and address common misconceptions and concerns related to HCV.

When developing resources, clients should be involved from the initial planning stage to ensure best practice.

Existing materials may be found through:

  • Public health departments
  • Health agencies
  • National or regional bodies (organisations which represent the interests of a sector or the community to the government)
  • Local, regional or national peer based or community organisations
  • Harm reduction organisations

 

Materials may include: pocket cards, posters, brochures, videos or smartphone applications and should include information on local services for prevention, testing, linkage to care and treatment, as well as tackling stigma and discrimination, and barriers to testing and treatment. These resources are critical to help clients understand HCV and understand the importance of getting treated and cured.

When developing resources, clients should be involved from the initial planning stage. Prioritise educational materials that demonstrate that they are both accurate and relevant to the target populations. Particular attention should be paid to sourcing materials that are culturally acceptable to Indigenous communities and people from culturally and linguistically diverse backgrounds. 

 

Helpful resources:

Supportive referrals: Programs must conduct ongoing assessments of client needs and barriers to care, and develop a list of the supportive resources available in the service catchment area to meet client needs, overcome barriers, and support successful referrals. Referral guides may not only be written — visit the services, identify champions within them who are willing to help facilitate access to your clients, invest in these relationships and nurture them. Supportive referrals can include:

  • Primary care services
  • Substance use treatment and harm reduction (including syringe exchange and safe smoking and safe snorting kits)
  • Supervised consumption services
  • Take home naloxone
  • Alcohol treatment services
  • Mental health services
  • Health insurance and pharmacy benefits enrollment
  • Transportation
  • Housing and legal services 
  • Food pantry
  • Free or affordable phone plans
  • Income assistance
  • Probation and parole systems and other services.
  • Family and carers services/support

 

Relationships: A robust referral network is important to successful HCV navigation. Formal agreements may be necessary to solidify referral relationships. Make sure the referral agreements outline expectations from your program and the referral agency, such as when clients can expect to receive services and what documentation is needed to release confidential client information for updates and to whom these record release rights are granted. Ensure the appropriate data protection laws and regulations are in place and adhered to.

Networking: Informal networking will also be critical to building relationships throughout the referral network. Formal or informal community mapping may help programs visualise the resources and potential collaborative opportunities near your site’s catchment area.

 

Helpful resources:

Team composition: The Navigator needs to work collaboratively with a multidisciplinary care team to successfully navigate clients. The team should include some, or all, of the following: HCV navigator, people who carry out HCV testing, navigation supervisor, medical provider, mental health and/or behavioural health and/or substance use care provider, and other health care professionals and social services from within or outside of your organisation. In some instances, in particular in resource-constrained settings, these roles may be overlapping. It is important to remember that effective care navigation can occur across a variety of access levels — work with what you’ve got!

Collaborative practice: It is critical to establish a good working relationship between the Navigator and the care team, and to work with the care team to guide the client through every step of the process. The Navigator should speak with the care team on a regular basis and must be made aware of appointment dates to support attendance as well as the attainment of clinical milestones to track progress through HCV care. The critical relationship is between the care navigator and the client who work together to build an individualised care and navigation plan. This plan should identify a set of individualised interventions that cover a client’s journey through HCV assessment, treatment and post-treatment. This plan should identify named members of the care team, eg clinician (medical /nursing/counsellor), care navigator, and peer to support the client during assessment and treatment, and to prepare them for prevention re-infection post-treatment. 

 

Helpful resources:

Training provision: HCV care navigators and members of the care team will need training on HCV (which includes transmission, prevention, stages of liver damage, treatment options, and post-cure liver health). In addition, navigators should complete trainings on;

  • Personal health information and data confidentiality
  • The principles of harm reduction
  • Trauma-informed and person-centred care
  • Counselling techniques
  • Local referral pathways

 

Depending on the context in which the program is operating, training might be required in overdose prevention, grief and loss, and options for drug treatment locally. Training can also mean providing opportunities for on-the-job mentoring and shadowing experiences. In some cases, navigators will need medical interpretation certification if they are bilingual and planning to translate for clients. As well, navigators will need up-to-date information on any changes to health insurance coverage or state-funded care and other benefits relevant to their client population and know what services are available in their area.

Supervision: Supervisors should support their staff and oversee navigation programs. It is recommended that the navigator meets with their supervisor weekly or every two weeks for one hour, either individually or in a group setting. This is to discuss things that are going well and any challenges, training needs, documentation needed for grant reports or organisation dashboards, cases that need special attention and other topics related to the navigator’s work.

Networking: Navigators should also be encouraged to participate in networking events such as coalitions of hepatitis and harm reduction providers and advocates, national and international conferences, and local HCV care navigator meetings, if available. Participating in these forums will provide opportunities to build stronger referral networks, troubleshoot challenges, and share best practices to ensure all clients can access HCV diagnostic testing and curative treatment. Navigators should be supported to undertake ongoing training opportunities on topics that emerge and are of relevance to the population served.

 

Helpful resources:

Documentation: Policies, protocols, and systems for documenting HCV care navigation services need to be developed to assure client progress and program outcomes are accurately tracked over time and to ensure the smooth running of the program. It is important to follow data confidentiality requirements in your area to protect private health information. Forms and databases should track information that will be used in reporting, and be as brief as possible for ease of use. Sample forms and templates can be found in the NASTAD Hep C Community Navigation Toolkit (see resource list below).

Confidentiality: The navigator should build the skills and competency necessary to be responsible for the documentation of their work while always protecting client information in accordance with the organisation’s policies and all applicable laws, rules, and regulations. Client confidentiality training should be conducted semi-annually (or as often as needed) to ensure navigators follow data privacy guidelines. Any Release of Information (ROI) forms should be reflective of the local privacy legislation in the jurisdiction in which the form is being used. ROI forms may include some or all of the following – consult your local privacy legislation for further information.

  • Client information
  • Receiving party’s information
  • Information to be shared
  • Purpose of the release
  • Expiration of authorisation
  • Disclaimers
  • Date and signature 
Helpful resources:

You should establish systems to assess the effectiveness of program activities. You can follow the ‘Plan, Do, Study, Act’ cycle or other methods to implement program changes designed to better serve your client population.

Questions to help guide this process may include:

  • Did everyone complete trainings and a full induction (navigators and clinicians)?
  • What workflow changes occurred and what remains to change (what worked well and what didn’t)?
  • Are you finding and reaching the target population?
  • Are you moving people forward on the care continuum (e.g. improving screening rates, treatment initiation rates, SVR testing rates, etc)? This can be accomplished by reviewing program implementation notes, assessing outcome data, conducting surveys and/or focus groups with the target population, or with local medical and other service providers

 

External bodies or agencies may be available to support this process.

*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

 

 

Challenges to setting up a HCV care navigation program in your service and how to overcome them

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.

 

Resources


Frequently asked questions

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.

What does the evidence say? 

Interventions to enhance testing and linkage to treatment for hepatitis C infection: a systematic review and meta-analysis Cunningham EB, et al.  2021  Read the paper
Patient and provider perceived barriers and facilitators to direct acting antiviral hepatitis C treatment among priority populations in high income countries: A knowledge synthesis  Amoako A, et al. 2021 Read the paper
Hepatitis C Care Pathway Associated With Increased Screening, Confirmation, and Diagnosis Communication to Patients  Rodriguez-Watson C, et al.  2021 Read the paper
A Cost Reimbursement Model for Hepatitis C Treatment Care Coordination  Behrends C, et al.  2019 Read the paper
Clinical effectiveness, cost effectiveness and acceptability of community-based treatment of hepatitis C virus infection: A mixed method systematic review  Pourmarzi D, Hall L, et al.  2019 Read the paper
Evaluation of a hepatitis C clinical care coordination programme’s effect on treatment initiation and cure: A surveillance-based propensity score matching approach Deming R, et al. 2018 Read the paper
Cost-effectiveness of hepatitis C screening and treatment linkage intervention in US methadone maintenance treatment programs  Schackman B, et al. 2018 Read the paper
Check Hep C: A Community-Based Approach to Hepatitis C Diagnosis and Linkage to Care in High-Risk Populations  Ford M, et al.  2018 Read the paper
Increasing Access to Hepatitis C Virus Medications: A Program Model Using Patient Navigators and Specialty Pharmacy to Obtain Prior Authorization Approval  Vu T, et al. 2018 Read the paper
Audio-computer-assisted survey interview and patient navigation to increase chronic viral hepatitis diagnosis and linkage to care in urban health clinics de la Torre AN, et al.  2017 Read the paper
From Care to Cure: Demonstrating a Model of Clinical Patient Navigation for Hepatitis C Care and Treatment in High-Need Patients Ford M, et al.  2017 Read the paper
Value of comprehensive HCV treatment among vulnerable, high-risk populations  Moreno G, et al.  2017 Read the paper
Implementation of evidence-based patient navigation programs  Freund K, et al. 2017 Read the paper
A Randomized Trial of a Hepatitis Care Coordination Model in Methadone Maintenance Treatment  Masson C, et al. 2013 Read the paper
The History and Principles of Patient Navigation Freeman H & Rodriguez R. 2011 Read the paper
Establishing common cost measures to evaluate the economic value of patient navigation programs Whitley E, et al.  2011 Read the paper


Implementation theories:

Title
Author
Year
Link
Making sense of implementation theories, models and frameworks Nilsen, P 2015 Read the paper
A refined compilation of implementation strategies: results from the Expert Recommendations for Implementing Change (ERIC) project Powell B, et al.  2015 Read the paper
Effective Practice and Organization of Care (EPOC) Shepperd S, et al.  2015 Read the paper