What do Providers and Community Members Think About Disease Intervention Specialists?: Provider and Community Member Assessments in New York City

Abstract

Background:

Disease intervention specialists (DIS) effectively interrupt population-level spread of diseases including sexually transmitted infections. Healthcare provider and patient engagement is critical to DIS’ success. Few studies have examined attitudes towards DIS among these groups.

Methods:

We invited 634 providers from STI, human immunodeficiency virus, and viral hepatitis partnerships with the New York City (NYC) Health Department and 412 members of a NYC Health Department-led community advisory group, to take provider and community surveys regarding awareness, perceptions, and experiences with DIS. Results were summarized across surveys by shared themes: awareness of DIS’ role, experiences with DIS, and perceptions of DIS.

Results:

Provider and community surveys yielded 73 and 86 responses, respectively, for response rates of 11.5% and 20.9%. Provider and community awareness of DIS responsibilities were as follows: partner notification, 74.0% (provider survey) and 89.5% (community survey); linkage to care, 72.6% and 92.1%; partner services, 69.9% and 86.8%. Confidentiality was the top barrier noted by providers (16.4%). Among community respondents, 13.1% and 23.7% incorrectly believed DIS could disclose identifying health information to a patient’s neighbors or friends, or to law enforcement, respectively. Overall, 56 providers and 44 community respondents had previous DIS interactions; of those, 78.8% and 74.4% reported positive experiences.

Conclusions:

In our modest sample or urban providers and community members, we observed high overall awareness of DIS responsibilities though lower for providers. Community findings suggest misperceptions about DIS relating to confidentiality and privacy of health information. Education to clarify and boost awareness of DIS may increase comfort, trust, and engagement.

Disease intervention specialists (DIS) are trained public health professionals that locate individuals diagnosed with or exposed to infections and provide timely linkage to testing, treatment, and prevention services; their services effectively interrupt disease progression and transmission.^1,2 DIS have been a part of STI programs since at least the 1930s and are often leveraged for other communicable diseases, as well as during emergencies, with recent examples including COVID-19 and mpox.^3–5 In 2023, DIS working within the New York City (NYC) Health Department STI Program conducted nearly 13,000 investigations based on positive syphilis laboratory tests and completed over 3000 syphilis interviews.⁶

The effectiveness of DIS hinges on engagement from both patients and healthcare providers.^4,7,8 However, there is limited information regarding patients’ and providers’ awareness, perceptions, and willingness to engage with DIS or provide partner contact information during the course of an investigation.^4,7,9 Published literature examining community perspectives and awareness shows varied levels of trust in public health professionals and contact tracers that were magnified during the COVID-19 pandemic, with notable disparities across race and ethnicity, gender, and sexual orientation.^8,10–13

In 2021, NYC was among 59 jurisdictions that received the DIS Workforce Development supplement, funded as part of the American Rescue Plan Act of 2021, that aimed to strengthen the DIS workforce by improving retention and cross-training.¹⁴ With receipt of this funding, the NYC Health Department planned an ambitious suite of activities to onboard and train DIS, and develop programs and structures that support and enhance DIS work. Recognizing that perceptions and experiences of providers and community members regarding DIS shape whether and how they engage with DIS programs,¹⁵ we surveyed healthcare providers and community members to measure and characterize their awareness, perceptions, beliefs, and experiences interacting with DIS.

MATERIALS AND METHODS

We administered parallel electronic, anonymous surveys tailored to healthcare providers (39 survey items) and community members (42 survey items) to characterize awareness and perceptions of DIS responsibilities and titles; identify barriers, facilitators and preferences for engaging with DIS; and describe previous experiences interacting with DIS.

Sample Population

Respondents for the provider survey included 634 contacts from human immunodeficiency virus, STI, and viral hepatitis contracts and initiatives with the NYC Health Department, including clinical and non-clinical staff working in healthcare organizations (e.g., program administrators, clinical care coordinators, and those working in quality improvement). The provider survey launched in July 2023 and remained open through October 2023, with up to four reminders to respond. Respondents for the community survey included 412 members of a NYC Health Department-led community sexual health programming advisory group. The community survey launched in June 2023 and remained open through August 2023, with up to three reminders to respond. The survey was available in English and Spanish. Respondents completing the provider and community surveys received a $30 gift card.

Respondent Characteristics

In both surveys, demographic questions captured gender, race, and ethnicity. Provider survey respondents were asked about borough of clinical practice, while community survey respondents were asked a question regarding their borough of residence. Provider survey respondents were asked if they had ever diagnosed an STI, and the frequency with which they diagnose sexually transmitted infections in their practice; community survey respondents were asked about whether they had ever received an STI diagnosis.

DIS Role and Responsibilities: Provider and Community Awareness

Provider respondents were first asked a general awareness question regarding DIS: “Before taking this survey, were you aware that trained Health Department staff … follow-up with both patients and providers after the diagnosis of certain infectious diseases?” with response options of “yes,” “no,” or “unsure.” Those who answered “yes” to that question were asked if they were aware that DIS had the following professional responsibilities: linkage to care and treatment (“linking patients to care, treatment, and services”), partner services (“linking contacts to screening and treatment services”), and partner notification (“confidentially notifying exposed partners/contacts of potential exposure”).

Community respondents were asked: “Before taking the survey, did you know that there are trained public health professionals from the NYC Department of Health that are specifically responsible for … finding and counseling people with sexually transmitted infections and their partners?; making sure that a person knows that they have been exposed to a virus?; maintaining confidentiality to protect the personal information of someone that has been diagnosed with a sexually transmitted infection?; providing services to the partners of persons that have been diagnosed with a sexually transmitted infection?; and making sure that a person with an infection gets the help they need to get treatment?” All had response options of “yes” or “no.”

DIS Professional Titles: Provider Familiarity and Community Preference

Provider respondents were asked to rate their familiarity with these professional titles: “disease intervention specialist,” “public health advisor,” and “contact tracer.” For each title, respondents were asked to specify the level of familiarity on a 4-point scale, from “very unfamiliar” (1) to “very familiar” (4). Respondents indicating “familiar” or “very familiar” (3 or 4) were grouped together in analyses.

Community respondents were asked two open-ended prompts asking them to reflect on their opinion about and their preference for DIS professional titles. The first question asked respondents to reflect on whether the terms, “disease intervention specialist,” “case investigator,” and/or “contact tracer” were stigmatizing. Community respondents were then asked to provide their preference and suggestions for DIS professional titles. We coded opinions as either stigmatizing, not stigmatizing, or neutral, and included preferred terms in qualitative analyses.

Provider and Community Perceptions of Engaging With DIS

Provider respondents were given a structured question regarding barriers to working with DIS, asking respondents to note which, if any, impeded their work with DIS: confidentiality concerns, not having enough time, lack of clarity regarding health department role, prior negative experience, reluctance to provide health information without mechanism to validate DIS credentials, or another reason. An open-ended question was included in the provider survey to capture facilitators: “In your opinion, what would make it easier to work with Health Department staff conducting disease intervention and investigation activities?” We identified and categorized themes, and grouped participant suggestions accordingly as confidentiality, time, clarity, experience, and trust in DIS credentials.

Community perceptions were measured for five items: (1) “I believe I can trust trained public health professionals from the NYC Health Department enough to share sensitive information with them about my health and my behaviors”; (2) “I believe that trained public health professionals from the NYC Health Department will keep my personal health information confidential”; (3) “I believe that trained public health professionals from the New York City Department of Health can quickly connect me to services that I need such as testing, treatment, and linkage to care”; (4) “I believe that trained public health professionals from the New York City Department Health play an important role in protecting my health and the health of my community”; and (5) “I am confident that trained public health professionals from the NYC Health Department will treat me with dignity and respect.” Responses were initially provided on a 5-point scale (1 = Strongly Disagree; 5 = Strongly Agree), then grouped as: disagreement (rating of 1 or 2), neutral (rating of 3), or agreement (rating of 4 or 5).

Provider and Community Experiences With DIS

In both community and provider surveys, respondents were asked whether they had ever interacted with DIS. Those that reported previous experiences with DIS were asked follow-up questions regarding perceived quality of the interaction.

Provider survey respondents were asked to rate their experience as “overall positive,” “overall negative,” or “overall neutral.” Community survey respondents were asked to rate the quality of their experience across 8 indicators: (1) general experience, (2) confidence in DIS maintaining confidentiality, (3) clarity of DIS, (4) understanding of DIS role, (5) time taken by DIS to answer questions, (6) DIS knowledge of needed services, (7) respectful treatment by the DIS, and (8) overall satisfaction with the interaction. Responses were initially provided on a 5-point scale, then grouped as: overall negative (rating of 1 or 2), overall neutral (rating of 3), or overall positive (rating of 4 or 5).

Analyses

Community and provider samples were limited to complete surveys and analyzed using SPSS and SAS. For both surveys, we analyzed structured responses to generate proportions. For open-ended text responses, we used inductive thematic analysis to code and identify key concepts. Findings from both surveys were contrasted across key themes: awareness of DIS role and responsibilities; provider familiarity with and community opinions about DIS professional titles; perceptions about engaging with DIS; and experiences interacting with DIS.

RESULTS

Excluding incomplete surveys, there were 73 provider and 86 community surveys, representing response rates of 12% and 21%, respectively. Select participant characteristics are summarized in Table 1.

TABLE 1.

Select Characteristics of Provider and Community Survey Respondents, NYC, 2023

Characteristic	Provider Survey (N = 73)		Community Survey (N = 86)
	N	%	N	%
Gender
Man	23	34.3%	21	28.4%
Woman	40	59.7%	19	25.7%
Unspecified cisgender	0	-	25	33.8%
Transgender man	1	1.5%	2	2.7%
Transgender woman	1	1.5%	0	-
Gender non-conforming	1	1.5%	7	9.4%
Other	1	1.5%	0	-
Missing	6		12
Race/ethnicity
Asian	6	8.2%	3	3.5%
Latinx or Hispanic	23	31.5%	25	29.1%
Multiple	4	5.5%	5	5.8%
Non-Hispanic Black or African American	11	15.1%	26	30.2%
Non-Hispanic white	24	32.9%	27	31.4%
Missing	4		0
Borough*
The Bronx	18	24.7%	7	8.1%
Brooklyn	22	30.1%	29	33.7%
Manhattan	24	32.9%	20	23.3%
Queens	6	8.2%	19	22.1%
Staten Island	0	0.0%	1	1.2%
Other	0	0.0%	10	11.6%
Missing	3		0
Years in clinical practice†
<1–5 years	3	10.0%
6–10 years	5	16.7%
11–15 years	3	10.0%
16–20 years	3	10.0%
21+ years	12	40.0%
Missing	4
Ever diagnosed an STI†
Yes	27	90.0%
No	3	10.0%
Missing	0	-
Ever received an STI diagnosis
Yes			34	39.5%
No			43	50.0%
Missing			9	10.5%
Age
≤29			8	9.6%
30–44			32	38.6%
45–59			31	37.3%
60 and older			12	14.4%
Missing			3

^*NYC borough was collected as borough of residence in the community survey, and borough of clinical practice in the provider survey.

^†Responses limited to 30 participants who specified they were a clinical provider; non-clinical provider respondents (those working in healthcare facilities but not in a clinical care capacity) were excluded from summarizing these variables.

DIS Role and Responsibilities: Provider and Community Awareness

Among providers, 72.6% (95% confidence interval [CI] = 60.9%–82.4%) were aware that DIS are responsible for linkage to care and treatment, compared with 92.1% (95% CI = 86.0%–98.2%) of community members (Fig. 1). Seventy-four percent (95%CI=62.4-83.6%) of providers were aware that DIS are responsible for partner notification compared with 89.5% (95% CI = 82.6%–96.4%) of community members. Approximately 70% (95% CI = 58.0%–80.1%) of providers were aware that DIS provide partner services, compared with 86.8% (95% CI = 79.2%–94.4%) of community members.

Figure 1.

Proportion of provider (N = 73) and community (N = 76) survey respondents reporting awareness of DIS responsibilities*, with associated 95% CIs, NYC, 2023. *Linkage to Care and Treatment was captured as familiarity with “linking patients to care, treatment, and services” in the provider survey; and “making sure that a person with an infection gets the help they need to get treatment” in the community survey; Partner Services was captured as familiarity with “providing partner services” in the provider survey and “providing services to the partners of persons that have been diagnosed with a sexually transmitted infection” in the community survey; Partner Notification was captured as familiarity with “confidentially notifying exposed partners/contacts of potential exposure in the provider survey and “making sure that a person knows that they have been exposed to a virus” in the community survey.

Among clinical providers, 48.2% (13/27) reported that they always or often prepared their patients that the Health Department [DIS] may follow-up regarding positive STI test results, to assure treatment and care and confidentially notify partners; 18.5% reported that they sometimes prepared patients for DIS follow-up, and 33.3% reported that they rarely or never prepared patients for DIS follow-up.

DIS Professional Titles: Provider Familiarity and Community Preference

Provider respondents’ familiarity with professional titles was highest for “contact tracer” (N = 58/71; 81.7% familiar or very familiar), followed by “public health advisor” (N = 55/73; 75.3% familiar or very familiar), and “disease intervention specialist” (N = 35/71; 49.3%).

Among the 70 community responses to the open-ended item, 23 (32.8%) indicated that the professional titles of “contact tracer,” “case investigator,” and “disease intervention specialist” were stigmatizing (Supplemental Table 1, https://links.lww.com/OLQ/B365). Notably, several community members highlighted in their responses that the titles connote law enforcement or punishment. Among the three titles, the term “contact tracer” was identified as being the least stigmatizing, although several participants noted that the community at large may associate the term solely with COVID-19. Several respondents suggested choosing terms that centered “community” and “public health” in the professional title.

Provider and Community Perceptions of Engaging With DIS

Among the 73 provider respondents, 31.5% reported that they had no barriers to working with DIS (Fig. 2). Commonly noted barriers included confidentiality concerns (16.4%), being too busy to engage with DIS (13.7%), and lack of clarity regarding the health department’s role (12.3%). When asked about preferred methods of DIS outreach, providers most preferred contact via phone (N = 34; 50.7%), followed by e-mail (N = 29; 43.3%), with a preference for in-person visits noted by only a few (N = 4; 6.0%). When asked about facilitators for working with DIS, communication strategies to address lack of clarity and mistrust regarding disclosing confidential information were noted; several providers noted preferences for clear expectation-setting, bidirectional communication, and streamlined methods of contact between healthcare facilities and DIS (Supplemental Table 2, https://links.lww.com/OLQ/B365).

Figure 2.

Proportion of provider survey respondents indicating barriers to working with DIS, NYC, 2023 (N = 57).

Among the 76 community members responding to true/false items measuring knowledge regarding DIS, the majority correctly identified that “trained public health professionals from the NYC Health Department … play an important role in controlling the spread of an infectious illness,” and “… respond to public health emergencies such as outbreaks,” as true statements (97.4% and 92.1%, respectively; Fig. 3). Fewer community members correctly identified that trained public health professionals from the NYC Health Department, “… disclose personal health information to neighbors and/or friends when trying to locate a person,” and “… tell law enforcement the address of a person with an infection,” as false statements (86.8% and 76.3%, respectively).

Figure 3.

Proportion of community survey responses correctly answering knowledge questions regarding DIS, NYC, 2023 (N = 76).

Among the 76 community members responding to the agreement items measuring beliefs about DIS, 80.3% agreed that trained public health professionals from the NYC Health Department can quickly connect them to needed services; 85.5% agreed they can trust trained public health professionals from the NYC Health Department enough to share sensitive information about their health and behaviors; 85.5% agreed that trained public health professionals from the NYC Health Department play an important role in protecting their health and the health of their community; and 88.2% agreed that trained public health professionals from the NYC Health Department will keep their personal health information confidential. In comparison, a smaller proportion (77.6%) agreed with the statement “I am confident that trained public health professionals from the NYC Health Department will treat me with dignity and respect.” Nearly one-quarter (23.7%) agreed or were unsure if DIS can provide law enforcement with the address of a person with an infection, and 13.1% agreed or were unsure if DIS can disclose personal health information to neighbors or friend when trying to locate someone (Supplemental Table 3, https://links.lww.com/OLQ/B365).

Provider and Community Experiences With DIS

Across surveys, 76.7% (N = 56) of provider and 53.0% (N = 44) of community respondents reported previous interactions with DIS, of which 78.8% and 74.4%, respectively, rated their experiences positively (Table 2).

TABLE 2.

Provider and Community Survey Respondents’ Previous Experiences With DIS, NYC, 2023

	Provider Survey		Community Survey
	N	%	N	%
Previous experience with DIS*	73	100%	86	100%
Yes	56	76.7%	44	53.0%
No	16	21.9%	31	37.3%
Unsure	1	1.4%	8	9.6
Missing	0		3
Perceived quality of DIS encounter, among those with previous experience	56	100%	44	100%
Overall negative	4	7.1%	2	4.7%
Overall neutral	9	16.1%	9	20.9%
Overall positive	43	76.8%	32	74.4%
Missing	0		1

^*Questions regarding previous experience were asked in general terms regarding DIS; thus, may include experience with DIS across disease areas, including but not limited to STI.

Data on the quality of interactions with DIS from the community survey are shown in Supplemental Table 4, https://links.lww.com/OLQ/B365. Among community respondents with previous interactions with DIS (N = 44), 72.5% rated their experiences positively. The majority (89.2%) felt they were treated with respect, and 83.7% were confident that their personal information was kept confidential. Slightly lower proportions indicated overall positive rating of the DIS for giving them the time they needed to have their questions answered (78.9%); having knowledge of the services they needed (75.7%); being clear when explaining why they were initiating contact (N = 31; 75.6%); and explaining their professional role in a way that that was understood by the community member (N = 25; 65.8%).

DISCUSSION

The DIS workforce, a key component of STI programs, faces notable challenges, including a historic lack of investment, as well as declining staff retention and morale.¹⁶ It is important to note that the supplemental DIS Workforce Development funding initially supporting the work of bolstering DIS programs throughout the nation was abruptly rescinded in July 2023; its loss represents an unfortunate setback in investing and strengthening the DIS workforce. With those challenges in mind and given continuing discussions about how to modernize and adapt DIS functions,^17,18 it is especially important to dedicate efforts to ensure DIS programs are maximally efficient in providing services to populations with unique needs.

The results of our study can inform such efforts, as they provide a window into the perceptions and experiences of healthcare providers and community members regarding DIS. We identified salient themes for successful DIS engagement, as well as several barriers to DIS work from the perspective of both providers and community members, namely, lack of clarity regarding DIS’ role and responsibilities, limited familiarity with and resonance of commonly used DIS titles, and confidentiality concerns.

Lack of Clarity

While most respondents were aware of core DIS responsibilities, more than one-quarter of providers lacked awareness of DIS roles in linkage to care and treatment, partner services, and partner notification. When providers were asked about barriers to working with DIS, 12% reported lack of clarity regarding DIS’ role in disease intervention. One-third of clinical providers reported they either rarely or never prepare patients for potential DIS outreach. Leveraging providers to inform patients about DIS may be impactful in further increasing patients’ comfort with DIS and has been shown to be a significant factor in patients’ willingness to engage with DIS during the COVID-19 pandemic.¹⁹ Provider-level education could improve engagement with DIS and better equip providers to prepare their patients to engage with DIS. In NYC, formal training among providers regarding DIS has not been established; however, inclusion of information regarding DIS in provider-facing materials (such as toolkits) is a strategy being explored to expand awareness.

Familiarity and Resonance

When asked about professional titles DIS may use publicly, providers were most familiar with the term “contact tracer,” followed by “public health advisor,” and least familiar with the term “disease intervention specialist.” Higher familiarity with contact tracers is likely a reflection of the promotion of contract tracers’ role during the COVID-19 pandemic through media campaigns and may speak to the effectiveness of these campaigns in public awareness-raising. The comparatively modest familiarity with “public health advisors”—the most common publicly used title by NYC Health Department staff—suggests a need to sustain education on DIS’ role beyond COVID-19. Moreover, the differing familiarity across titles suggests the need for consistency in messaging, to amplify awareness among the public.

Community respondents noted limited resonance with the term “disease intervention specialist” or use of the term “disease investigation,” with some noting the association between the term “investigation” and law enforcement, and a strong preference for titles and descriptions that emphasized health versus disease. These findings emphasize the importance of community-level education on DIS’ role. While the term “disease intervention specialist” is not often used publicly by NYC Health Department staff, findings also underscore the need for public health to consider the negative associations with DIS-related terminology in community messaging.

Confidentiality Concerns

Confidentiality and security were prominent themes in both provider and community surveys. Concerns regarding the confidentiality of information provided to DIS was the most common barrier cited by providers. A small subset (10%) also noted a reluctance to provide health information to DIS. In an open-ended question to providers regarding what would facilitate participation with DIS, one participant noted the rising frequency of fraudulent calls and emails in general, and the need to ensure that DIS reaching out are truly Health Department employees before providing health information. Implementing methods to verify DIS credentials—such as text-based authentication systems—may increase trust and improve participation among healthcare providers.

Thirteen percent of community respondents believed DIS could disclose identifying health information to neighbors or friends when trying to locate someone, and almost one-quarter believed that DIS could inform law enforcement of the address of someone diagnosed with an infection. Taken together with provider survey results, these findings highlight the need to ensure that confidentiality expectations and policies are clearly communicated to patients and providers at the time of outreach and routinely included in educational messaging. Community survey findings illustrate that providing information on what DIS do not do, such as disclose personal health or identifying information, is equally important to describing what DIS do. Given the confusion and concerns about law enforcement involvement in relation to the work that DIS carry out, further research to identify strategies for increasing awareness and trust in DIS work is warranted, which can help to reduce health inequities among disenfranchised groups such as immigrants, persons who inject drugs, and persons who engage in sex work.

Limitations

There are several limitations to this study. First, we observed only modest return rates which led to relatively small samples, limiting our ability to examine significant differences by respondent characteristics. We do not have data on the non-responders to examine bias in those responding to the survey relative to the sample population. Second, the nonrandom sampling used for surveys yielded results that are not generalizable to the entire population of providers or community members in NYC, nor those outside of our jurisdiction. Third, the population for both provider and community surveys included individuals with an existing relationship with the NYC Health Department. These participants may be more familiar with the health department’s essential functions, including disease intervention. This may have resulted in overestimated awareness of DIS and more favorable perceptions of DIS. Fourth, it is important to contextualize the interpretation of the qualitative responses of the surveys’ open-ended items. We did not conduct double coding or utilize strategies to improve reliability, possibly resulting in biases in participants’ responses. Additionally, open-ended questions included precursor prompts to elicit opinions that may have unintentionally biased responses. Finally, while both surveys had similar domains (e.g., awareness, previous experiences), specific questions and response measurement were customized by survey. As a result, direct comparisons across provider and community surveys were not always possible. However, a strength was examining similar themes among two key groups, which allowed us to comprehensively characterize shared experiences; given the paucity of information regarding awareness and perceptions of DIS, future evaluations could build upon our methods and findings.

CONCLUSIONS

Across community and provider respondents, almost two-thirds indicated previous interactions with DIS, among whom three-quarters rated their experiences with DIS as positive. Additionally, it is notable that one-third of providers noted no barriers to working with DIS. These positive findings are a testament to the value of the deeply skilled DIS workforce, who receive considerable training in connecting with patients and providers, and heartening amidst challenges facing the current DIS workforce, which include reduced funding, retention, and need for increased training, professional development, and capacity-building.