Provider Perspectives on the Data-to-Suppression Initiative in Ryan White Part A Housing and Behavioral Health Programs

Abstract

The New York City “Data-to-Suppression” (D2S) initiative was launched to improve HIV viral suppression among Ryan White HIV/AIDS Program Part A (RWPA) clients through a combination of surveillance-based, client-level reporting and capacity-building activities with RWPA housing and behavioral health service providers. This study qualitatively examines provider perspectives on its implementation. Drawing from 8 RWPA-funded agencies participating in D2S, we conducted semistructured interviews with 24 purposively sampled providers from 8 RWPA-funded agencies participating in D2S, including patient navigators engaged in D2S outreach, patient navigator supervisors, and administrators. Interviews were conducted between August and November 2022. The interviews explored four topics: (1) D2S workflow and benefits, (2) implementation facilitators, (3) implementation barriers, and (4) areas for improvement. Providers reported that D2S was easy to implement and identified clients in need of additional support. Suggestions for improvement included issuing more timely reports, adding more detailed data to reports, and focusing the intervention on agencies where behavioral health and housing program staff do not already have access to clients’ HIV care and viral suppression status. Providers described barriers such as organizational capacity constraints (e.g., hiring and retaining staffing levels) and clients’ difficulty with maintaining viral suppression due to competing needs. Qualitative feedback from the providers responsible for delivering an intervention is critical to identifying refinements that could strengthen engagement in intervention implementation and thus critical to achieving and sustaining the intended impact.

Introduction

The Ryan White HIV/AIDS Program (RWHAP) for low-income and uninsured people with HIV (PWH) is an essential platform for reducing health disparities and scaling up evidence-based strategies to strengthen the HIV care continuum.¹ The majority of patients in RWHAP have multiple social determinants of poor health and use RWHAP services to mitigate those.² In New York City (NYC), PWH who are enrolled in Ryan White HIV/AIDS Program Part A (RWPA) services are more likely than other PWH to be retained in HIV care, but less likely than other PWH to be virally suppressed while retained in care.³ Upstream forces such as racism, as well as poverty, stigma, trauma, and incarceration, can all contribute to the most cited barriers to antiretroviral therapy adherence: unstable housing, mental illness, and substance use.^4

–8 Through grant recipient-community partnerships built into the federal legislation, each RWPA grant area conducts its own needs assessment, priority setting, and resource allocation processes to ensure access to an array of core medical and support services that meet the demands of the local epidemic and policy and services landscape.⁹ In NYC, where most HIV medical costs are covered by Medicaid, RWPA resources have been concentrated on delivery of medical case management, mental health, substance use-related, and support services to reduce the most common barriers to care/treatment. All NYC RWPA behavioral health (mental health, supportive counseling, and substance-related harm reduction) programs and housing programs all include patient navigation services. Through coaching, counseling, service system navigation, and linkage/coordination with other providers,^10,11 patient navigators fill key roles in multiple interventions showing effectiveness among PWH who have barriers to HIV care.^{12

–20} Yet these frontline staff (particularly in nonclinical program settings) often lack access to reliable information on clients’ medical visits and viral load test results, which could be used to direct outreach and support to clients at critical points in their disease management.

In response to these challenges, in 2021, the NYC Health Department and City University of New York Institute for Implementation Science in Population Health collaboratively launched the “Data-to-Suppression” (D2S) initiative and implementation science study. D2S builds on Data to Care (D2C), a public health strategy that uses HIV surveillance data to identify PWH who are out of care and link them to appropriate medical or social services.²¹ The D2S initiative extends D2C to address individuals who are already engaged in care but are not virally suppressed. Specifically, the NYC Health Department provides RWPA behavioral health and housing programs with routine, surveillance-based, person-level reports on their current clients’ HIV care and viral suppression status. The selection of behavioral health and housing programs for this study was based on those programs’ emphasis on addressing the most common barriers to viral suppression: mental health disorders, substance use disorders, and housing instability.

Drawing upon matched NYC RWPA programmatic data and surveillance data, NYC Health Department staff generated reports containing information on clients who were (1) out of care, meaning that they did not have an HIV viral load laboratory result reported in the last year, or (2) in care but virally unsuppressed as of their most recent viral load result in the year. Agencies with multiple D2S-eligible programs (mental health, harm reduction, supportive counseling, and/or housing) received one combined report representing unsuppressed and out-of-care clients enrolled in any of those programs. A sample report (with mock data) is shown in Fig. 1. Reports were accompanied by NYC Health Department trainings, technical assistance, and capacity building, including webinars, meetings with RWPA quality improvement (QI) staff to identify root causes of unsuppressed viral load, and assist with developing related QI projects. A full description of the D2S initiative has been published elsewhere.³

FIG. 1.

Example of a D2S report. D2S, Data-to-Suppression.

We conducted 24 semistructured interviews with staff from D2S-participating agencies to better understand their engagement in D2S and the implementation process. As a supplement to quantitative data on D2S effectiveness, this qualitative component was designed to characterize how reports and capacity-building assistance were perceived and used by providers at participating agencies. It can also be used to contextualize quantitative findings on effectiveness by shedding light on implementation-related factors that may have influenced the intervention’s outcomes.

Methods

Sampling strategy

D2S was implemented at 27 RWPA-funded agencies offering harm reduction, supportive counseling, housing, and/or mental health programs. Sampling occurred in two stages, beginning with the purposive sampling of 8 out of the 27 participating agencies²² to evenly represent clinical and community-based settings and to represent all 5 counties in NYC. Staff were recruited from programs receiving the intervention (RWPA behavioral health and housing programs). To gain a well-rounded understanding of providers’ engagement in D2S, three provider roles from each of the eight agencies were purposively sampled²²: a patient navigator engaged in D2S outreach, a direct supervisor of patient navigator staff, and an agency or program administrator. We specifically selected these roles because they were critical to different levels and aspects of D2S implementation—for example, agency leadership for their buy-in and commitment or approval of staff time to participate, patient navigators for their direct outreach to individual clients, and mid-level supervisors for their guidance to frontline staff regarding the use of reports to inform client outreach/follow-up efforts and the development and conduct of QI projects addressing root causes.

Interviews

Semistructured interview guides were developed to elicit providers’ views on D2S implementation and to explore factors (barriers and facilitators) that shaped agency and staff engagement in D2S. The guide included open-ended questions and optional probes that could be used as needed to elicit additional details and the specific order in which questions were asked could be adapted in response to the flow of a given interview. Questions about factors that may have influenced the implementation of D2S were informed by domains and constructs from the Consolidated Framework for Implementation Research (CFIR).²³

A single study team member with experience in qualitative methods (W.Y.) conducted informed consent processes and all interviews between August and November 2022, over videoconference. The D2S study launched in July 2021, and reports were distributed every 6 months from December 2021 through May 2023. Analyses will continue into early 2026. Each participant received a $75 gift card for completing approximately 60-minute interview. All interviews were digitally recorded and later transcribed.

Ethics

This study was approved by the NYC Health Department’s Institutional Review Board (protocol: 21-036).

Data analysis

The transcripts were analyzed by four study team members with expertise in qualitative methods (W.Y., H.G., M.P., C.E.). Using a content-based thematic analysis approach,²⁴ the team independently reviewed four transcripts to develop an initial codebook. The team then independently reviewed four additional transcripts to refine the codebook. Weekly consensus sessions were held to refine the codebook, discuss data coding, and resolve questions about the interpretation of specific interview segments. Once the codebook was finalized, it was used to analyze the entire dataset (including the initial transcripts used to develop and refine the codebook). The analysis followed a hybrid inductive–deductive process. The analysis explored CFIR constructs including (1) implementation climate (inner setting); (2) client needs and resources to meet them (outer setting); and staff perceptions of intervention: (3) source; (4) relative advantage; (5) complexity; (6) adaptability; (7) packaging; and (8) costs. Themes were identified as they appeared across transcripts, with special attention paid to themes relating to the objectives of the qualitative inquiry, namely, providers’ perspectives on the process of implementing D2S, the factors that promoted or hindered providers’ and clients’ engagement with the initiative, and the perceived impact of D2S. In addition to those themes, the team coded for any unanticipated themes that emerged as salient.

Results

Participant characteristics

Among the 24 staff interviewed, 50% were Hispanic and 37.5% were Black; 58.3% were women (Table 1). One third of respondents worked in patient navigator/care coordinator roles, one third as manager/supervisor roles, and one third as director-level roles.

Table 1.

Characteristics of Interviewed Participants

Category	N	%
Total	24	100
Race/ethnicity
Hispanic	12	50
Black	9	37.5
White	6	25
Asian	1	4.2
Other	7	29.2
Gender
Female	14	58.3
Male	10	41.7
Age
30–39	7	29.1
40–49	9	37.5
50–59	6	25
60+	1	4.2
Unknown	1	4.2

Implementation and benefits of D2S

Staff cited benefits of the D2S reports for discovery of relevant clinical information, direct service delivery, and interunit collaboration (for clients who were enrolled in more than one program). Community-based organization staff especially noted that the reports were helpful for streamlining their workflows, as they were less likely than staff at hospitals/clinics to have a direct line of communication with the client’s primary care provider:

It eliminates guesswork, especially since a lot of times you’re relying on a clinic to send you lab work in order to know what a client’s viral load is. When you get the report, you don’t need to do that anymore.

Regarding direct service delivery, staff noted that the D2S reports helped draw attention to clients who needed more active follow-up. For example, one staff member at a hospital/clinic stated:

I felt the list highlighted the fact that we needed to engage these high-risk individuals more.[…] that we needed to develop a plan to more aggressively engage consumers that [were] lost to care or follow-up.

A perceived benefit of the reports with respect to collaboration was that they focused attention on clients who were enrolled in multiple support service programs at the same agency and could benefit from coordinated attention to viral suppression. Some agencies convened multidisciplinary case conferences in which providers from different programs discussed the progress of clients who had appeared on a D2S report. By drawing attention to the barriers each client faced, providers could determine as a team if a client could benefit from additional services (e.g., if a client already enrolled in a harm reduction program could benefit from being enrolled in mental health or housing services). One supervisor from a community-based organization explained that the reports facilitated a unified approach to client-centered care:

[D2S] brings people together and it’s good for the clients to see that all their providers, whether it’s, you know, housing provider would be me, their harm reduction counselor, their substance abuse counselor, their therapist, they see that hey, here we are, we’re all you know, on the same page, everybody’s here for me.

In general, staff from agencies with onsite medical services viewed the reports as less useful for the purpose of care planning and coordination, as compared with providers at agencies without onsite medical services. Providers who worked at agencies with colocated medical services reported that they had access to clients’ lab results onsite and were already monitoring clients’ viral suppression status. A director at a hospital/clinic-based agency stated:

[D2S] may be more useful for community-based organizations, for example, who don’t have a medical component and are relying on their medical partner to get them the information that doesn’t always happen in the way that they needed to or wanted to. We’re a huge health system. We’re all about the medical information, right?

However, some providers from agencies with onsite medical services stated that the reports contained additional information beyond the lab results they already had access to or reminded them to prioritize viral suppression outreach. Occasionally, staff discovered that clients were seen elsewhere for medical care and had more recent test results than those recorded in their agency’s electronic medical record system.

Most frontline staff reported that they did not directly see or engage with the actual D2S reports; in these cases, program directors received D2S reports and provided condensed information to others—for example, emphasizing to staff which clients they should follow up with about viral suppression. Program directors explained that this strategy protected the time of staff who were already stretched thin by understaffing and by workflow adaptations made in response to the COVID-19 pandemic. Some frontline providers expressed that they would like direct access to the reports. Others preferred receiving condensed information from their supervisor. One stated:

It’s giving me something more specific to focus on and not get too lost in other pieces. I think it’s one of the things like that I just see experienced in so many clinics when we want to have 18,000 different initiatives and try and solve the problem in 20 different ways all at the same time and so, it has me in sort of, a focused effort kind of, space.

Implementation facilitators

Factors described as facilitating implementation of the D2S initiative included user-friendly reports and availability of training. Providers also noted their own expertise in building strong relationships with clients.

Generally, reports were described by respondents as easy to use and helpful. A minority of interviewees reported that there was an initial learning curve, but training and continued exposure to the reports helped to successfully integrate them into practice. For example, one patient navigator at a community-based organization stated:

…at the beginning, don’t get me wrong, it could be very intimidating, but once someone that knows how to read it […] then once you have a great understanding of what everything says, then it’s pretty self-explanatory.

Follow-up with clients who appeared on a report for D2S was described as being facilitated by provider expertise in conducting client-centered conversations about viral suppression status. Providers shared that they used nonconfrontational, caring, and nonpatronizing language. They reported building strong, healthy, and supportive clinical relationships to foster success. A patient navigator described their relationship with a client who had difficulty in maintaining viral suppression:

We can actually have a session where we laugh and talk, like a casual session. I can come out and say to him, “Listen, let’s figure out how to take your medication, because I’m really concerned about your health. I want to see you, whether you’re in the nursing home or your home or wherever you are, I want to see you be as healthy as possible.” I say, “Because if you’re not healthy, then you can’t come into the clinic and we can’t laugh like this.”

Providers—both frontline and in administrative roles—also emphasized strategy in conversations around viral suppression. They discussed the importance of meeting a client where they were in their progress and approaching the conversation in a collaborative manner. They also reported using open-ended questions and motivational interviewing techniques. The staff member above went on to say that they used indirect approaches to elicit feelings on medication adherence with clients they knew would not be receptive to an outright discussion of their viral suppression status. For example, they explained:

You have to approach certain topics in a certain way. To talk about health and medication, you can’t approach it, like—Her name’s not Mary, but say, “Mary, how come you haven’t taken your medication” And now it sounds you’re confronting her. You have to approach through the back door, like, “Mary, is there any medication I can get refilled for you?” Now you sound like you’re helping her. And then you could say something like, “Do you need any more of the HIV meds?” Now you put your foot through that door.

One provider described how they gradually built trust with clients:

It’s just very basic open-ended questions. “How are you doing? I haven’t heard from you in a while. Please call back.” […] You don’t want people to feel like they’re being put in a corner. You want them to communicate, ‘cause even if they say, “I don’t really feel like talking right now.” That’s still communication. And then, hopefully, that’s something that you can build on.

These providers also noted the benefit of having a network of services to which they could refer clients with complex barriers to viral suppression. Especially within agencies that had other services on site, staff could conduct warm handoffs to ensure that clients were able to access needed services.

Implementation barriers

Providers described implementation barriers in both the inner (agency) and outer (population) settings. The main outer barriers identified were mental health and substance use challenges that led some clients to deprioritize viral suppression. One provider stated:

It’s not a surprise that patients who are resistant or ambivalent for whatever reason, whether it be active substance use, active mental health issues that know they should take their medication, but taking the medication becomes secondary.

Sometimes temporary interpersonal challenges (outer setting) needed to be addressed before clients were able to make progress toward viral suppression.

He was just getting out of a very emotionally turbulent relationship, where there were days where he forgot [to take his HIV medication]. Or he said, “To hell with it with the medicine.” So it’s no surprise that his numbers were that number.

Proposed solutions to challenges in the client population were provider conference calls, motivational interviewing, being prepared in multiple languages, conducting home visits, and intensive support (scheduling/escort) for provider visits.

A major and cross-cutting inner-setting challenge was scarcity of resources and staffing. In late 2022, when interviews were conducted, COVID-19 vaccinations had been widely distributed in NYC, but the pandemic was still an active emergency. Some administrators detailed how they had difficulty in maintaining frontline staff given the widespread burnout among health care workers from the COVID-19 pandemic. One stated: “the shortage of staff in hospitals and in health care settings and places like that […] has really been a challenge.” Interviewees emphasized that short staffing made it difficult to appropriately resource their agencies. QI initiatives such as D2S sometimes had to be deprioritized in favor of continuing basic services.

Suggested D2S areas for improvement

Participants’ suggested areas for improvement, including more timely and detailed laboratory results in the reports and more meaningful involvement of frontline staff in the ongoing development of the initiative.

Reports have been distributed twice per year—once in the spring and once in the fall. There is an up to 2-month lag time between when the surveillance data reporting period closes and when the reports are delivered to agencies electronically. Some staff noted that by the time they received the reports, the data were “outdated,” and in some cases, they already had access to more recent laboratory results.

Staff also requested more granular information about clients’ viral load results, such as numerical values or at least different ranges of values for viral load. Providers explained that this information would facilitate triage and/or help with determining the intensity of follow-up needed. For example, a client with an unsuppressed, but low, viral load may require less intensive and immediate outreach and support than a client with a very high viral load. As a community-based organization supervisor said: “it’s all about the numbers.”

Finally, two clinical supervisory staff members described a disconnect between their individual agencies and the NYC Health Department. They expressed a belief that on-the-ground staff were not always meaningfully involved in the design of interventions or made sufficiently aware of the rationales for strategies chosen. One staff member commented:

I don’t always think [the reason for the project] translates down, trickles down to the folks on the ground doing the work. We’re like, what is this? Why are we doing this? Why are they asking me for this?

These staff suggested a more meaningful representation of staff needs on future projects rather than a top-down, health department-delivered approach. They also recommended that future projects be planned with close attention to the resources and staffing levels required for implementation.

Discussion

The D2S initiative was generally well received by providers, with some areas identified for improvement. Overall, providers observed that the initiative streamlined access to viral suppression data and focused attention on clients who could use additional support. The surveillance-based reports were described by most interviewees as simple to use, though perceived usefulness varied by organizational setting. Providers at agencies with onsite clinical services noted that the viral load data in the D2S reports were often outdated by the time they received the reports compared with the data available in their agencies’ own electronic medical record systems, except for results from external facilities. As facilitators of D2S, participants highlighted frontline providers’ preexisting strong relationships with clients and expertise in communication informed by techniques such as motivational interviewing. These findings support existing literature showing that staff in behavioral health and social service programs are well equipped to work with clients around medication adherence.^25

–28 Recommended adjustments included greater timeliness and detail in the delivery of viral load test results and greater involvement of frontline staff in the development of interventions. Perceived barriers included those intrinsic to serving a population with substantial behavioral health needs and widespread understaffing and resource limitations within agencies following the COVID-19 pandemic. These barriers are also well documented in existing literature.^{29

–37}

A strength of D2S was that it targeted actively enrolled RWPA clients, thereby leveraging established relationships with support service providers to address viral suppression barriers. Provider interviews on the implementation of other data-to-care projects have identified that these initiatives can help link clients to resources for overcoming structural and more holistic barriers to care such as transportation, stigma, substance use, mental health needs, and lack of social support.^38
–40 Although we expect that D2S would be transferable to other kinds of program settings (e.g., case management, behavioral health, or housing programs funded through streams other than RWPA), we would recommend that the reports be implemented in a context in which the clients identified for follow-up can be contacted by a provider with comprehensive training in conducting outreach and patient navigation for vulnerable populations. As qualitative research, this study may not be generalizable but was intended to provide insight on implementation in the context of RWPA care. D2S and other data-to-care efforts have the potential to streamline health services workflows by providing surveillance-based, actionable information directly from the health department. In our study, providers reported that D2S assisted with identifying clients needing additional support and that they were well prepared for the kinds of follow-up conversations that were prompted by D2S reports. Future iterations of D2S should optimize report timeliness and utility, integrate recent stakeholder input, and be accompanied by further efforts to address structural barriers and resource shortages overall.

Footnotes

Acknowledgments

The authors gratefully acknowledge the New York Ryan White Part A HIV Planning Council members, Part A service providers, clients, D2S Advisory Board members, and the Care and Treatment Program leadership and staff (Guadalupe Dominguez Plummer, Gina Gambone, Bryan Meisel, Frances Silva, Cullen Hunter, Milen Beyene, and Isidra Grant) who assisted with implementation.

Authors’ Contributions

M.P.: Formal analysis, data curation, writing—original draft, and project administration. C.E.: Formal analysis, data curation, writing—original draft, and project administration. W.Y.: Conceptualization, formal analysis, investigation, and data curation. M.I.: Conceptualization, methodology, writing—review and editing, supervision, project administration, and funding acquisition. T.A.: Writing—review and editing, supervision, and project administration. D.N.: Conceptualization, methodology, writing—review and editing, supervision, project administration, and funding acquisition. H.G.: Conceptualization, methodology, writing—review and editing, supervision, project administration, funding acquisition, formal analysis, and data curation.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was funded with support from the National Institute of Mental Health Award 5R01MH125735.

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