Guidance for Developing Patient Navigation Programs

As a component of the Patient Navigation Demonstration Project, NASTAD required each program to collect and report both quantitative and qualitative data related to patient navigation activities on a quarterly basis. NASTAD held monthly technical assistance calls with each program, coordinated quarterly group calls for all sites, and hosted a series of listening sessions on priority issues emerging from the project.

NASTAD synthesized information from these multiple data sources to distill key lessons learned from the experiences of demonstration project sites. This section draws from those lessons to offer guidance for SSPs interested in implementing or expanding patient navigation.

Guidance for emerging programs falls into these categories:

• Employer Support for Patient Navigation Staff
• Innovative Navigation Strategies
• Qualities of an Effective Navigator
• Budget Considerations

Empowering staff requires an understanding of and accountability to the challenges they face and burdens they carry when in these roles. The people most equipped to provide these services are effective, and vulnerable, because of their connections to and love for the people with whom they work.

Employers can support and be responsive to patient navigation staff through:

• Recognizing lived experience as education: to find some of the best potential patient navigators, employers should consider lived experience as important as formal qualifications.
• Fair and living wage, even if the patient navigator does not have a college degree.
• Willingness to hire someone that has past involvement with the carceral system.
• Removing other barriers to the employment of people with lived experience such as lifting mandatory drug testing policies.
• Specialized training: Employers can assess if there are specific trainings that would benefit patient navigation staff. These could range from various computer literacy lessons such as Word or Excel, better understanding of data management, to a more individualized onboarding process if the patient navigator has never worked for a community-based organization or health department before.
• Flexible work hours: Participants need help outside of the traditional 9am – 5pm schedule, and navigators must have flexible schedules to allow them to better meet the needs of their participants.
• Evaluate advancement opportunities: Are there opportunities for the navigator to make either a lateral move or advance within the agency? Consider cross-training staff as well as supporting educational advancements so that navigators can achieve career growth and is not only relegated to peer navigation. 
• Regardless of their professional boundaries, secondary trauma is a very real possibility. Patient navigators hear real-life horror stories of the trauma and abuse faced by participants and observe the stigma they experience not only within systems of care but from society at large. In this work, navigators will have participants that end up in the carceral system, that fall out of contact, and that die. If a navigator has the qualities needed to be an effective in their role, they will not be immune to the trauma they witness. Secondary trauma may also trigger firsthand trauma experienced by some individuals. Secondary trauma may negatively affect the mental and emotional health and lead to staff burnout. Workplace culture should recognize the effects of secondary trauma and be able to accommodate staff self-care.

Harm reduction programs are effective not only because of the resources they provide but because of how they are delivered. Designating funding and TA to strengthen the harm reduction workforce and promote program sustainability supports health outcomes from comprehensive services like patient navigation and encourages development of the relationships that make participation in these programs transformative.

See more guidance on this topic in Harm Reduction Hacks: Workforce Development Hacks for SSPs.

The role of SSPs in service navigation became even more pronounced during the first waves of the COVID-19 pandemic, when project sites took on additional functions to disseminate information and connect participants to COVID-19 prevention and care, including vaccination.

The coincidental timing of the project and the pandemic meant that project sites were implementing the innovative SSP-based navigation strategies proposed in their applications while developing new strategies in real-time to respond to a worldwide health crisis.

Strategies for Patient Navigation Staff 

Service navigation with PWUD is a time- and energy-intensive process and can be a challenging role. Effective navigators amass extensive and comprehensive knowledge of referral processes, service availability, and local partners and program contacts. Retaining effective navigators should be a priority for any SSP or harm reduction program implementing patient navigation services. 

Mentorship

Patient navigators, especially people newly transitioning into this role, should have regular opportunities to debrief with a mentor or trusted supervisor. Discussion should include caseload review, workshopping approaches and next steps, and personal well-being and support needs. Patient navigation staff should also be able to raise identified or emergent needs and opportunities with their mentor and program leadership.   

Non-Engagement Periods 

Establish set hours and periods (weekends, vacation, personal and medical leave) when patient navigators will not be responsible for working with navigation participants. Work with staff to establish and maintain clear roles and boundaries and develop a staffing structure that allows leave time and flexibility. Incorporate mental health leave to mitigate burnout and encourage self-care. 

Coordinate In-Office and Street-Based Outreach

Develop and maintain spaces for program staff in different direct-service and participant-facing roles to share referrals and identify participants who are interested in navigation services. Work collaboratively to facilitate engagement, service availability, and relationship building. 

Centering Navigator Expertise 

Patient navigators develop detailed, in-depth expertise on community needs and priorities, engagement, and strengths and gaps in available services. Navigation staff should be empowered to demonstrate flexibility and best judgment when working with participants, including innovative engagement strategies and access to dedicated funding that can be used for incentives and as-needed costs. Paying for a meal or covering costs to replace a driver’s license can lead to effective engagement and facilitate navigation goals.  

Navigation Strategies and Community Engagement 

Comprehensive and sustainable patient navigation depends not only on passionate and well-resourced staff, but on robust service referrals and organizational partnerships. Responding to the health and safety concerns of PWUD requires coordinated support and expertise, whether within a single organization or across service providers. Navigator engagement with participants should be accompanied by structural changes to improve service delivery, coordination, and follow-up within and between organizations. 

Community Trainings and Group Discussion

Trainings and capacity-building exercises, whether virtual or in-person, allowed patient navigators to interface with other community care providers and to reinforce the referrals and relationships that facilitate navigation. Referral networks were sometimes formalized by memoranda of understanding but were more often based on individual outreach and relationship building. These communication channels were also helpful when implementing responses to the COVID-19 pandemic. SSPs can be intentional in engaging in and creating networking opportunities with other service providers in order to develop and strengthen referral pathways for their participants.

Service Network Resource Guide 

Creating a resource guide of local service providers and programs allowed navigation staff to map resources and points of contact within different organizations and service areas. The creation and updating of a resource guide can also provide an organic opportunity for onboarding and building awareness and relationships for patient navigation staff. 

Participant Feedback Mechanisms

Recurring surveys provided a channel for navigation staff to hear directly from participants and incorporate or respond to requested services or other needs. Staff can also have informal check-ins with navigation recipients and solicit feedback from SSP participants to inform navigation services and referral networks, as this information is invaluable for continually assessing the service landscape for PWUD and building partnerships accordingly.

Innovative Program Models

To adapt to COVID-19 prevention and social distancing measures, project sites introduced new program and engagement models. These included pop-up navigation sites, in parking lots and other open spaces, to promote awareness, facilitate engagement, and provide flexibility for staff and participants. Pop-up sites can co-locate infectious disease testing or other related services. Other approaches included drive-thru navigation services to extend program reach and increase options for receiving services. 

Support Groups and Peer Connections

Patient navigation participants can benefit from sharing experiences and hearing from other people about care seeking, treatment from and interactions with providers, and goals when accessing services. Peer connections for patient navigators, within the same organization or across programs, can offer problem solving, sharing of best practices, and professional and emotional support. 

Telehealth

Telehealth appointments, using video- and phone-based connections, quickly became a primary and invaluable tool for patient navigators. Policies enabling telehealth for physical and behavioral health care facilitated access for people seeking services during the pandemic and addressed barriers that traditionally keep people from care—several sites shared stories about program participants who pursued long-deferred treatment once telehealth appointments were more widely available. Sites addressed barriers to telehealth by offering cell phone access on outreach, allowing participants to use office space and dedicated equipment to attend appointments, and working with creative and culturally aware providers. Policies, procedures, and infrastructure supportive of telehealth-based care can facilitate positive health outcomes for PWUD.  

The experiences and health concerns of people who use drugs are constantly changing, and demand dynamic and proactive responses from service providers. Implementing patient navigation services can improve participant engagement and health outcomes as well as better prepare SSPs to address new and emergent health needs within their communities through active partnerships and outreach. Dedicated funding for patient navigation allowed SSPs to share and document best practices and innovative strategies that can inform SSP operations and structure, service navigation, and organizational response during public health crises. Funding and resources to implement and expand patient navigation programs should also include regular opportunities to learn from navigation staff and inform programmatic and policy goals. 

To provide effective patient navigation, the patient navigator must have or be able to develop interpersonal skills, including communication skills and emotional intelligence, and be comfortable with filling a variety of roles for their participants. Listed below are other necessary skills for successful patient navigators, illustrated by quotes from navigators in this demonstration project: 

Lived Experience

With lived experience, you bring a depth of knowledge not contained in classrooms or textbooks.

A patient navigator’s lived experience may allow for a particularly unique depth of insight into participants’ own experiences. It may facilitate a stronger level of trust for the participant when they feel the navigator is able to relate on a more personal level to their own experiences and challenges. However, patient navigators with lived experience must also be able to take a step back and allow participants autonomy in decision making.

Cultural Humility

We have to ask questions in order to get to truly know our participants and be sure to check any bias we may unintentionally bring into the space.

Cultural humility is essential and fundamental to an equitable approach to patient navigation. Cultural competence speaks to one’s knowledge of a culture, community, or even an individual’s cultural background. It acknowledges diversity in communities served and appreciates the cultural and social factors that impact health, wellness, and treatment. Cultural humility keeps the navigator open and flexible, allowing them to be educated by the community and individuals that they serve. It also allows staff to create a service model that is shaped to embody the culture of participants that are being served. When the participant is able to educate their navigator, a more trusting and equitable relationship is created.

Resourcefulness

Participants need results even when we don’t have all of the answers immediately; sometimes we have to just figure it out as we move along...

Patient navigators must have the ability to be nimble and responsive to participant needs, finding unique and personalized ways to support PWUD. Resourcefulness is needed to address and try to find ways to overcome the variety of barriers to services faced by the participant. Resourcefulness can mean finding solutions with “out of the box” creative problem solving.  Often, the navigator will find their participants are incredibly resourceful as well. Tapping into the participant’s own ingenuity allows participant and navigators to work together as thought partners.

Compassion

Participants can sense phony a mile away and you probably won’t see them again. That’s a major lost opportunity to help someone in need. 

Demonstrating compassion and empathy helps to build participant trust and effective engagement. This approach increases the likelihood of a higher level of participation, follow-up and adherence. Patient navigators must strive to understand and lean into being emotionally aware of their interactions with participants and show up authentically.

Trustworthiness

This work isn’t about the money or the praise. You have to have a commitment, will, and desire to do it.

There is no true patient navigation without trust. This can only be created by being transparent, accountable, and demonstrating a true desire to help. By establishing trust, the navigator creates an environment in which their participant understands they can be honest about drug use and still receive services. Trust must be accompanied by patience, acceptance, and a willingness to continually work to maintain trust after it has been established. Patient navigators also need to trust in the process of their work, recognizing that not all progress in linear.

Personal Connection

At the end of the day, we are all human and need love and support even when we feel like or have been told that we don’t deserve it.

Personal connection humanizes participants and acknowledges the complexity of each individual and their circumstances. It is vital to understand some participants will have had experiences where they were not given the grace to be a multifaceted individual but were confined to the one-dimensionality of their diagnosis or the issue that caused them to originally seek services.  

Advocacy

Having someone advocate for them with persistence is critical in fully supporting their recovery journey and road to self-actualization.

Participants need allies in this space and patient navigators can fill this role. Navigating social services and other systems of support can be a daunting task and sometimes the needs of PWUD can be dismissed. Thus, they need someone who understands the totality of their situation, to support their process with intention and without judgment or stigmatization. This stigma can be internalized to the point where a participant does not feel that they are not worthy of care. Given  the many barriers faced in traditional systems of care, a patient navigator’s advocacy and support can make jumping these hurdles a bit more tolerable.

Project findings indicate that when resourced, SSPs can quickly develop and carry out navigation services and are incredibly effective at connecting PWUD to a wide range of needed services and maintaining relationships over time, which can contribute to improved health outcomes. Each site was awarded $100,000 in Year 1 and $65,000 in Year 2. According to the experiences of project sites, these funding levels are recommended as the minimum required to implement patient navigation. Funds should be specifically dedicated to support navigation/case management above and beyond core SSP activities.

The experiences of demonstration project sites and some general recommendations for budgeting for patient navigation services are summarized below.

Staffing

All programs used most of the funding for staff time; most programs hired one full-time patient navigator, while others funded several part-time patient navigation staff.

• Recommendation: Future funding for SSP-based navigation services should ideally support more than one full-time staff position to prevent burnout, encourage sustainability and staff retention, and maximize opportunities for relationship-building and community outreach to build out referral networks.

Outreach

Expanded outreach strategies are crucial to identifying new participants and maintaining engagement once enrolled in patient navigation; several programs utilized funding towards leasing, outfitting, or upkeep of a mobile vehicle.

Transportation

Transportation is a common barrier for service access, and many program budgets supported participant transportation costs for taxis/rideshares or public transportation, as well as mileage reimbursement for patient navigators conducting outreach and accompanying participants to appointments.

Flexibility and Emergent Costs

During project implementation, programs encountered a range of unanticipated costs, to which they were able to creatively respond to support navigation, such as: costs associated with obtaining documentation like a driver’s license or birth certificate, medication costs or pharmacy co-pays, cell phones for participants, and incentives for participants to attend appointments.

• Recommendation: Funding for patient navigation should maximize flexibility for programs to be responsive to changing participant needs. Paying for a meal or covering costs to replace a driver’s license can lead to effective engagement and facilitate navigation goals.