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On July 13th 2010 the National HIV/AIDS Strategy (NHAS) set forth a goal of increasing national linkage to care rates from 65% to 85%. A local AIDS Services Organization (ASO) that recently transitioned to a Federally Qualified Health Center (FQHC) in New Orleans, LA, USA had a testing cohort of 2,785 with a consistent 2% positivity rate. Prior to hiring a dedicated Patient Navigator in 2012, agency linkage to care rates hovered around 50%. This article charts how the agency increased its linkage to care rate by 40% over the course of three years and will examine inputs, strategies and best practices of a successful linkage-to-care model implemented in New Orleans, LA, USA.
Keywords: HIV/AIDS; Linkage to Care; A local AIDS Services Organization (ASO); the National HIV/AIDS Strategy (NHAS); Federally Qualified Health Center (FQHC)
client in order to remind them of upcoming medical and social service appointments. This continuous follow-up is meant to pro- The above-mentioned model resulted in an average quarterly vide “red carpet” service and an inviting experience for the client LTC rate for newly and previously diagnosed clients. In calendar across the continuum of care. At the client’s first medical appointyear 2014, there were 108 confirmed positive HIV tests through ment, it is standard to collect an extensive medical history as well this agency’s CTR program. Of those, 96 were successfully as a CD4/viral load in addition to other tests. Once a client has linked to care within 90 days of diagnosis. Of the 108 confirmed received a blood draw for CD4/viral load within three months of positives, 4 additional clients were linked within greater than 90 diagnosis, they are considered linked to care by LOPH standards. days. The 2014 LTC rate of <90 days by quarter was 89%, 100%, 88%, and 85%, respectively, for an average rate of 90.5%. Of In the case that a client does not return initial calls/texts the 108 confirmed positives, 68 reported being newly diagnosed; OR ceases to communicate after initial contact, the PN turns of these, an average quarterly rate of 90% were linked to care the case fully over to the state Disease Intervention Specialists (N=60) in less than 90 days. LTC rates for sub-populations such (DIS) and assists them with LTC for the client as needed. as Men who have sex with men (MSM) and young Black men who have sex with men (YBMSM), data showed MSM (N=52)
and YBMSM (N=34) were linked-to-care at a rate of 90% and 88%, respectively.
After the client attends their first two medical appointments, personalized reminders of appointments from the PN cease, al- In July 2015, this agency adjusted reporting protocol to lowing the client to assume greater responsibility for their care. meet updated NHAS goals. For July (N=10) and August (N=4) However, the PN monitors appointment attendance and reaches 2015, 86% of clients were LTC within 30 days of diagnosis. Conto out the client as needed. The PN may recommend that the versely, independent LTC rates for MSM (N=5) and YBMSM client be enrolled in a more intensive tier of case management (N=8) LTC <30 days were 60% and 100%, respectively.
if they require additional supports. The PN continues to act as a personal advocate and support system for the client, as well as
an essential part of their care team.
If a client falls out of care, the PN will reach out to the
client to help identify barriers to accessing care. The PN may suggest additional resources to help the client overcome these Agency employees report that streamlining the LTC process barriers and ultimately re-engage them in care.
through one person created a simpler approach for HIV counselors, case managers, and providers, and resulted in more com-
After a client tests positive for HIV, their paperwork is transported to a locked filing cabinet maintained by the PN. The PN transfers client demographic information from their file into an encrypted, password protected excel spreadsheet located on the PN’s work computer. As the PN begins to track their progress plete and accurate data collection. The agency’s high LTC rates for 2014 appear to support this conclusion. Prior to hiring a dedicated PN in 2012, multiple employees shared the role of LTC and data tracking. During that time, LTC rates were around 50% and only increased to 83% when LTC was streamlined through one person. In analyzing data, this program found that examining linkage rates for sub-populations is useful in identifying
example, MSM and YBMSM are often referred to in literature as “hard-to-reach populations”.11 However, this model only saw a 2% difference between the populations.
This agency found it important for partners and funders to have a shared definition and understanding of LTC. For example, it was found that that one grantor considered individuals linked-to-care if a CD4/viral load was drawn within 90 days of diagnosis, while another required clients to have had CD4/viral load drawn and have attended at least one appointment with a primary care provider to be considered linked to care. In order to be accountable to different funders and partners, our agency has found that counting, labeling and reporting data according to the requirements of different funding sources while keeping track of linkage numbers beyond the minimum requirements is critical. Finally, it was found that the best LTC is achieved when the PN continues to follow up with clients that did not link-to-care within the 90 period. The data showed that 4 individuals in 2014 were linked to care beyond the 90 day period. Though linkages beyond 90 days may not count towards funding requirements, experience demonstrates the importance of being sensitive to client needs and mindful that clients will move along the continuum of care at their own pace.
Feedback from clients and agency employees demonstrated that keeping the patient navigation flow simple and concise positively influences clients’ experiences and the efficiency of the PN and reduces clients’ perceived barriers in accessing care. A 2011 study found/recommended increased engagement (patient navigation) at each step in the continuum of care after finding low LTC rates nationally. This agency showed that extended or multiple meetings with a client will often compound barriers to accessing care. Oftentimes, clients become frustrated or lose interest if they are required to return multiple times before receiving medical care. Therefore it is important for providers to realize that many clients may have competing priorities and decreasing the number of visits is likely to augment entry to care. For example, the time it takes to travel to and from multiple enrollment appointments may conflict with clients’ work and familial responsibilities, affect involuntary disclosure, or are prohibitively expensive for the client.
This patient navigation model works to ensure that clients complete the following steps during their first meeting with the PN: completion of all intake paperwork, enrollment in case management services, and scheduling of the first medical appointment. While this results in a lengthy (normally half-day) appointment for the client, feedback from past clients is positive; one long day is preferable to multiple appointments spread out over time. Having the client prepared with all the necessary documents, managing expectations around the time necessary to complete the process, and having snacks on hand are also helpful.
This patient navigation program found that training and retraining of HIV counseling staff and volunteers is essential to a achieving a successful LTC model.13 Testing technologies and protocols change frequently and front line staff must remain up to date in effort to effectively counsel and refer clients to the proper resources. Additionally, allowing the PN to create intuitive intake paperwork influences the success of this model. Experience has shown that convoluted forms and instructions create barriers for both the client and volunteers who provide HIV testing and counseling, and that clear communication from the PN helps staff and volunteers provide clients who have tested positive the most efficient and streamlined transition into care. Furthermore, communication between the PN and the state DIS has proven to be an indispensable tool for this program; in some cases the DIS were able to reach out to clients or share certain data with the PN that assisted in LTC for especially hard-toreach clients.
Data sharing between prevention staff and primary care staff has been critical to the success of this agency’s patient navigation model, as well as culturally appropriate communication with clients. Information sharing agreements are obtained from the client immediately after they test positive, which enables different actors within the continuum of care to contact the client and offer their services in a timely manner. In addition, beyond the sharing of formal data, there is also the sharing of “soft” data, aka conversations and emails, between prevention and primary care providers. This allows for a more individualized client experience.
A critical component to the success of this patient navigation model is the PN cell phone. The PN maintains a “smart” cell phone purchased by the agency used in all communication with the client. The cell phone is critical to this program's success for multiple reasons. First off, the cell phone does not show up as a particular agency when it calls a client, which reduces stigma and anxiety for the client. Secondly, this model has demonstrated that clients of all ages prefer communication via text message to phone calls and voice mails. Text messages are perceived as less intrusive and intimidating than phone calls and allow the client to respond at their own pace and comfort. Critical to successful client text messaging is the sending of culturally and age appropriate text messages to clients. In particular, “code switching,” or changing the vernacular and delivery of verbal and written communication, is critical to building trust with the client and maintaining their confidence. A randomized control study from March 2015 found that a group of HIV positive clients receiving personalized case-management around linkingto-care were more likely to link-to-care than the control group of HIV positive clients who received standard of care communication. Furthermore, the study found that increased communica-
phone used at the agency in Louisiana allows for more of this interaction at the client’s leisure.
Major challenges to LTC for this patient navigation model align with those found nationally. In particular, clients’ individuallevel and situational variables can present barriers to successful LTC. Financial instability, age, and emotional distress are three of the most challenging barriers to LTC that this agency has found using this model. A lack of finances may result in housing instability or poor access to regular cell phone or internet communication, both of which can impede the ability of the PN to be in regular contact with the client. Age also plays a major factor in the successful linkage of clients to primary care following diagnosis. Staff has found that younger clients are more likely to have unstable living situations and/or be less likely to divulge their status to family members. Youth may have little to no experience navigating the healthcare system as an adult, and are more likely to face challenges understanding the medical implications of their diagnosis and the importance of being proactive about health. Lastly, extreme emotional distress in the form of anxiety, depression, and denial can be an impediment to timely LTC, especially for newly diagnosed clients. This is one reason for the continued long-term follow-up used by this model.
By streamlining the patient navigation model and maintaining close ties with case management and primary care programs at the agency, this model has been successful at addressing the various barriers to LTC faced by clients. Many services are physically housed at the same location as the PN, which enables the client to enroll in and begin receiving services on the same day that they meet with the PN. Early in the program it was noted that clients became frustrated if they had to come back for multiple appointments before seeing a doctor and receiving medication. By limiting the number of initial appointments before seeing a provider, and extending the length of the initial appointment, staff have seen greater LTC when clients enroll in the services the same day as their first appointment with the PN. Furthermore, data sharing agreements allow for fluid communication between programs and with the client. As soon as a client’s needs are identified, they can be referred to and access a given program, such as behavioral health, housing or food pantry support. In addition, the agency maintains programs and providers that specialize in working with adolescents and young adults, including a primary care clinic and behavioral health providers that solely serve women and adolescents.
Efficient and patient-centered LTC results in improved physical and mental health outcomes for clients testing HIV-positive, especially those who are experiencing medical complications or mental health issues. Co-housing the PN within the same location as PMC and case management allows for strong professional and social ties between the PN and other agency employees.
The strength of these relationships means that in the event that a client with severe medical complications needs to see a provider more quickly than the normal scheduling would allow, the PN is able to coordinate with providers to expedite their medical care. The trust and respect developed and sustained between the PN and staff within PMC and case management departments is critical to the success of the patient navigation model, and ultimately to the timely and patient-centered care that the model provides to clients.
When adapting any service delivery model from one agency to another, undoubtedly there will be a need to deviate from the original model and customize it for different service approaches and protocols. While the overall model presented has a very high LTC rate, different components of the model presented in this article contribute to the agency’s rate. Organizations possess varying levels of capacity and each element of this model’s approach to LTC will not be necessary or appropriate for every agency. For example, a PN cell phone that doesn’t register as a clinic on the caller ID may not be possible if an agency does not have the funds for a dedicated cell phone. In this case, it may prove worthwhile to investigate other forms of communication that allow for that anonymity and a client-centered approach to communication: a dedicated PN Facebook account, a secured PN Gmail/Gchat account for messaging, or a program that allows for FaceTime are all forms of communication that clients may be willing to consent to. For those agencies working to achieve a higher LTC rate, the authors recommended looking at each piece of this model individually to see what may be feasible and useful, instead of trying to implement the full model.
Complete data for 2011 is unavailable due to new program implementation. Data tracking did not become consistent until late 2011. Furthermore, because it was not possible to prepare a control group for the purposes of this paper, it is important to note that other factors could contribute to high LTC rates. During the period in which the PN program was being implemented the agency providing this data was one of the larger and well-known clinics in New Orleans, LA, which may have influenced some of the results. For example, advertisements and targeted outreach during high volume seasons (i.e. Decadence, Mardi Gras, etc.) increases the visibility of the clinic. As a result, individuals that engage in high-risk behaviors during these seasons may have a heightened awareness of the risks and consequences associated with their behaviors. On the other hand, up until 11/11/14 the Louisiana based agency was using a rapid/conventional test (western blot) algorithm for providing a proof of diagnosis. One study from New Jersey found that “many persons who receive preliminary positive rapid test results do not return for their confirmatory test 15,16 results and thus might not access necessary medical care.”
This finding from New Jersey did not include a patient navigation model that could help a client navigate the system between tests like the model discussed in this paper. Furthermore, the New Orleans based agency began using a rapid/rapid model for LTC on 11/11/14 and since then has continued to see the same high LTC rates that were achieved prior to the switch. It is recognized that this model’s success could have been influenced by the change in testing algorithms.
The above technical review provides a detailed description and analysis of the LTC model used at a local health clinic in New Orleans, LA, USA which exceeded the 2015 National HIV/ AIDS Strategy (NHAS) goal of reaching an 85% LTC rate, ahead of schedule. This model effectively identifies and decreases traditional barriers to care through the use of innovative algorithms and intradepartmental collaborations. Identifying a PN that is relentless in their approach and culturally sensitive, tech savvy, and self-motivated can help provide equitable access to LTC and medical services. This model is not intended to be used as a one-size-fits-all solution, rather a reference for agencies working to enhance their LTC experience and achieve the updated NHAS goals.
Ashley King, Caitlin Canfield and Joseph Olsen are all current or former employees of the Federally Qualified Health Center in New Orleans, LA, USA presented in this article.
The authors declare that they have no conflicts of interest.