Locating People Diagnosed With HIV for Public Health Action: Utility of HIV Case Surveillance and Other Data Sources

Abstract

Introduction:

Human immunodeficiency virus (HIV) case surveillance and other health care databases are increasingly being used for public health action, which has the potential to optimize the health outcomes of people living with HIV (PLWH). However, often PLWH cannot be located based on the contact information available in these data sources. We assessed the accuracy of contact information for PLWH in HIV case surveillance and additional data sources and whether time since diagnosis was associated with accurate contact information in HIV case surveillance and successful contact.

Materials and Methods:

The Case Surveillance-Based Sampling (CSBS) project was a pilot HIV surveillance system that selected a random population-based sample of people diagnosed with HIV from HIV case surveillance registries in 5 state and metropolitan areas. From November 2012 through June 2014, CSBS staff members attempted to locate and interview 1800 sampled people and used 22 data sources to search for contact information.

Results:

Among 1063 contacted PLWH, HIV case surveillance data provided accurate telephone number, address, or HIV care facility information for 239 (22%), 412 (39%), and 827 (78%) sampled people, respectively. CSBS staff members used additional data sources, such as support services and commercial people-search databases, to locate and contact PLWH with insufficient contact information in HIV case surveillance. PLWH diagnosed <1 year ago were more likely to have accurate contact information in HIV case surveillance than were PLWH diagnosed ≥1 year ago (P = .002), and the benefit from using additional data sources was greater for PLWH with more longstanding HIV infection (P < .001).

Practice Implications:

When HIV case surveillance cannot provide accurate contact information, health departments can prioritize searching additional data sources, especially for people with more longstanding HIV infection.

Keywords

HIV surveillance public health action population surveillance methods Data to Care

From 2006 through 2016, the use of human immunodeficiency virus (HIV) case surveillance data evolved from epidemiologic monitoring to using these data for public health action. For example, Data to Care programs use HIV case surveillance data to identify people living with HIV (PLWH) who are not in care, link them to care, and support the HIV care continuum.^1

-7 One major challenge of using HIV case surveillance and other health care databases for public health action is that public health officials often cannot locate PLWH based on the contact information available in these databases. HIV case surveillance may contain contact information that is incomplete, outdated, and/or incorrect.^6

-11 Health departments are not required—nor are they always sufficiently staffed—to follow up on cases for updated contact information. In addition, medical records and laboratory data, which are major sources of HIV case surveillance data, often contain insufficient contact information. The inability to locate PLWH results in missed opportunities to provide needed public health services.

Surveillance and programmatic activities have had to rely on other databases, such as sexually transmitted disease (STD) registries and commercial people-search databases, to obtain contact information.^4,6
-8 Data to Care programs likewise encourage health departments to use other data sources to find information that may be missing from HIV case surveillance. These data sources include public and nonpublic health databases such as Social Security Death Index databases and state Medicaid databases.² Other data sources have been necessary because HIV case surveillance was not designed to collect or track contact information over time.¹²

Our main objectives for this analysis were to (1) assess the accuracy of contact information in HIV case surveillance and additional data sources and (2) determine whether time since HIV diagnosis is associated with successful contact and more accurate contact information in HIV case surveillance. Secondary objectives were to assess (1) how additional data sources that were queried varied by jurisdiction and (2) the benefit of using additional data sources to locate and contact PLWH diagnosed >5 years ago. This analysis adds to the growing literature on the use of HIV case surveillance and additional data sources to locate PLWH.^4,6
-8

Methods

The National HIV Surveillance System collects a core set of data on the characteristics of PLWH in all US states and dependent areas. Data are collected at the local level by health departments using standard confidential case reports, which are then uploaded into the Enhanced HIV/AIDS Reporting System (eHARS)—a browser-based application provided by the Centers for Disease Control and Prevention to health departments to collect, store, and retrieve data on people diagnosed with HIV. These data are then transmitted to the Centers for Disease Control and Prevention without personal identifiers.¹³ For the purpose of this article, data collected by local health departments and uploaded into eHARS for the National HIV Surveillance System are referred to as “HIV case surveillance data.”

The Medical Monitoring Project is a nationally representative surveillance system that collects behavioral and clinical data on PLWH beyond those collected by the National HIV Surveillance System. From 2005 through 2014, the Medical Monitoring Project sampled people diagnosed with HIV from HIV care facilities in 23 jurisdictions; therefore, its sampling methods excluded people diagnosed with HIV who were not receiving care.¹⁴ The Case Surveillance-Based Sampling (CSBS) project was conducted from November 2012 through June 2014 and was designed to evaluate a method of sampling people directly from the National HIV Surveillance System to include people not receiving care for HIV in the Medical Monitoring Project. Results from CSBS informed the Medical Monitoring Project’s future sampling strategy and provided a way to evaluate the accuracy of contact information in HIV case surveillance.

CSBS selected a random population-based sample of people diagnosed with HIV from eHARS stratified by time since diagnosis in 5 jurisdictions. These jurisdictions were selected from jurisdictions already participating in the Medical Monitoring Project. Our analysis included data from 4 jurisdictions: Los Angeles County Department of Public Health (LACDPH), New York City Department of Health and Mental Hygiene (NYC DOHMH), San Francisco Department of Public Health (SFDPH), and Washington State Department of Health.

Participants were included in CSBS if by the date they were sampled to become part of CSBS they (1) had an HIV diagnosis reported in eHARS, (2) were presumed living (ie, there was no death documented in eHARS), (3) were aged ≥18, and (4) were believed to live in 1 of the 5 CSBS jurisdictions based on their most recent residence in eHARS.

In addition to collecting behavioral and clinical data on people diagnosed with HIV, we collected data on recruitment efforts for every sampled person. These data included information on whether contact information in HIV case surveillance and additional data sources was accurate for every sampled person. We conducted CSBS for 3 years but collected data on recruitment only for the first 2 years. We sampled 200 people per jurisdiction each year; however, in 2013, we sampled 300 people per jurisdiction in 2 jurisdictions. The total sample size was 1800 people, of whom 1793 (99.6%) had complete data on recruitment efforts (ie, 7 people did not have any data on recruitment efforts). CSBS staff members attempted to contact and locate 1800 sampled people for participation in CSBS. They used multiple data sources to do so. Health department sources included HIV case surveillance data (ie, the data in each jurisdiction’s eHARS), STD or partner services databases, supplementary HIV laboratory surveillance databases, and integrated disease surveillance systems, which combine data from HIV, tuberculosis, and STD surveillance. CSBS staff members also searched electronic medical records, AIDS Drug Assistance Program databases, Ryan White clinical databases, prisons or jails, free and subscription people-search databases (eg, Spokeo, Metrosearch, and Lexis Nexis), and Internet search engines (eg, Google). Staff members were able to access electronic medical records because they had surveillance authority, and jurisdictions obtained formal consent to use additional data sources when required locally.

Methods for locating and contacting people varied across jurisdictions and according to local data sources and regulations. When contact information was not available in HIV case surveillance or contact attempts indicated that HIV case surveillance data did not lead to successful contact, CSBS staff members searched for contact information in additional data sources by using personal identifiers, such as name and date of birth found in HIV case surveillance. CSBS staff members conducted the matching process in their jurisdictions and did not transmit personal identifiers to the Centers for Disease Control and Prevention. To maintain confidentiality, when CSBS staff members used people-search engines to search for people, they took steps to ensure that the origin of the search was not traceable to an HIV program. For example, the staff members who signed contractual agreements with these people-search engines were staff members with a wider, non–HIV-specific affiliation with the health department (eg, an infectious disease or prevention division affiliation), and Internet protocol addresses used in searching for people could not be linked to Internet protocol addresses for HIV programs in the health department.

When HIV case surveillance contained the name of the HIV health care facility a person visited, CSBS staff members asked facilities to provide current contact information. CSBS staff members contacted people by text, by telephone, by letter, in person at medical appointments, during home visits, and/or via email using standardized recruitment scripts designed to protect participant confidentiality.

Definitions

Accuracy of contact information in HIV case surveillance and additional data sources

If contact information led to the contact of a person, then it was defined as accurate in HIV case surveillance and additional data sources. If CSBS staff members corresponded or talked with a sampled person by text, email, telephone, letter, or in person, then we counted them as contacted. If more than 1 data source provided accurate information on a person, we counted each data source as providing accurate information.

Time Since Diagnosis

We obtained data on time since diagnosis (ie, time from the first positive HIV test result until the sampling date) from HIV case surveillance. We drew the sample to ensure that half of the sampled people were diagnosed >5 years before the sampling date, 40% were diagnosed 1 to 5 years before the sampling date, and 10% were diagnosed <1 year before the sampling date.

Data Analysis

We evaluated descriptive statistics using SAS version 9.3.¹⁵ This evaluation included the number and percentage of people for whom an accurate telephone number, address, or HIV health care facility was available in HIV case surveillance and/or additional data sources. We used the Cochran–Armitage test for trend to evaluate whether the ability to make contact with people and the accuracy of personal information in HIV case surveillance were related to the length of time people had been diagnosed with HIV. Last, we looked at the number and percentage of people contacted using additional data sources only by time since diagnosis. We used the Cochran–Armitage test for trend to evaluate whether the use of additional data sources only was related to the length of time people had been diagnosed with HIV.

The Centers for Disease Control and Prevention determined that the CSBS project was a public health surveillance activity used for disease control, program, or policy purposes and, therefore, was not subject to institutional review board review. Participating states, territories, and facilities obtained local institutional review board approval when required. We obtained informed consent from all participants, and they received approximately $25 cash or a cash equivalent for their participation. Protocols were in place to safeguard the confidentiality of sampled people.

Results

Accuracy of HIV Case Surveillance

Jurisdictions often began recruitment with contact information in HIV case surveillance, which included residential addresses, telephone numbers, and HIV health care facility information. Of 1793 sampled people with complete data, CSBS staff members were able to contact 1063 (59%) people (Figure). Of the 1063 contacted people, 511 (48%) had an accurate address or telephone number in HIV case surveillance. Addresses and telephone numbers were accurate for 412 (39%) and 239 (22%) contacted people, respectively. The health care facility in HIV case surveillance was accurate for 827 (78%) contacted people.

Figure.

Flowchart of accurate telephone or address information in human immunodeficiency virus (HIV) case surveillance and additional data sources among all contacted people living with HIV in 4 US public health jurisdictions, the Case Surveillance-Based Sampling (CSBS) project, 2012-2013. The CSBS project collected behavioral and clinical data on people diagnosed with HIV and collected data on recruitment efforts used by CSBS staff members to locate and contact 1800 sampled people. These data were used to assess the accuracy of contact information in HIV case surveillance and additional data sources and determine whether time since diagnosis was associated with more accurate contact information in HIV case surveillance and successful contact. Additional data sources used included HIV care facilities, sexually transmitted disease or partner services, people-search engines (eg, LexisNexis, Spokeo, Metrosearch), an integrated disease surveillance system, the Internet (eg, Google, 411, Whitepages.com), Ryan White administrative database, prisons or jails, supplementary HIV laboratory surveillance database, social services databases, and AIDS Drug Assistance Program databases. The 4 jurisdictions were the Los Angeles County Department of Public Health, New York City Department of Health and Mental Hygiene, San Francisco Department of Public Health, and Washington State Department of Health.

The accuracy of contact information available in HIV case surveillance varied by jurisdiction, particularly for telephone numbers. In LACDPH and Washington State Department of Health, 97 of 191 (51%) and 126 of 301 (42%) contacted people had at least 1 accurate telephone number in HIV case surveillance, respectively, compared with 3% in NYC DOHMH (9/324) and SFDPH (7/247) (Table 1).

Table 1.

Accuracy of HIV case surveillance and additional data sources for people living with HIV contacted in 4 US public health jurisdictions, the Case Surveillance-Based Sampling project, 2012-2013^a

Sampled or Contacted People	Total, No. (%)	Jurisdiction, No. (%)
Sampled or Contacted People	Total, No. (%)	Los Angeles County Department of Public Health	New York City Department of Health and Mental Hygiene	San Francisco Department of Public Health	Washington State Department of Health
Total sampled	1793	400	500	393	500
Total contacted	1063 (59)	191 (48)	324 (65)	247 (63)	301 (60)
HIV case surveillance^b
Accurate telephone number or address	511 (48)	110 (58)	194 (60)	56 (23)	151 (50)
Accurate address	412 (39)	42 (22)	194 (60)	50 (20)	126 (42)
Accurate telephone number	239 (22)	97 (51)	9 (3)	7 (3)	126 (42)
Accurate information on HIV health care facility^c	827 (78)	140 (73)	270 (83)	155 (63)	257 (85)
Any additional data source only^d,e
Accurate information^f	552 (52)	81 (42)	130 (40)	191 (77)	150 (50)

Abbreviation: HIV, human immunodeficiency virus.

^aThe Case Surveillance-Based Sampling (CSBS) project collected behavioral and clinical data on people diagnosed with HIV and collected data on recruitment efforts used by CSBS staff members to locate and contact 1800 sampled people. These data were used to assess the accuracy of contact information in HIV case surveillance and additional data sources and to determine whether time since diagnosis was associated with more accurate contact information in HIV case surveillance and successful contact.

^bHIV case surveillance refers to data collected locally by health departments using standard confidential case reports and uploaded into the Enhanced HIV/AIDS Reporting System—a browser-based application that helps health departments collect, report, and manage data on people diagnosed with HIV.

^cThe person had an HIV health care facility listed in HIV case surveillance that was the facility where he or she currently sought care.

^dAdditional data sources used included HIV care facilities, sexually transmitted disease or partner services, people-search engines (eg, LexisNexis, Spokeo, Metrosearch), an integrated disease surveillance system, the Internet (eg, Google, 411, Whitepages.com), Ryan White administrative database, prisons or jails, supplementary HIV laboratory surveillance database, social services databases, and AIDS Drug Assistance Program databases.

^eThere was no accurate telephone number or address in HIV case surveillance; however, there was an accurate telephone number or address found in any additional data source.

^fAccurate information is defined as a telephone number or address that led to the successful contact of a person.

Accuracy of Additional Data Sources Queried

For the 1793 sampled people, the data sources consulted most often after HIV case surveillance were HIV health care facilities (n = 1111, 62%), STD or partner services databases (n = 1034, 58%), people-search engines (n = 861, 48%), integrated disease surveillance systems (n = 688, 38%), and Internet search engines (n = 602, 34%) (Table 2). The data sources that were queried varied by jurisdiction. SFDPH had access to many electronic medical record systems and searched HIV health care facility data for 81% (320/393) of people sampled, whereas LACDPH searched HIV health care facility data for only half of the people sampled (199/400). The use of Internet search engines also varied across jurisdictions. NYC DOHMH used the Internet to search for contact information or to verify information obtained from other data sources for 88% (440/500) of people investigated, whereas LACDPH did not use this data source at all (Table 3).

Table 2.

Additional data sources queried for contact information to locate and contact people living with HIV and their accuracy in 4 US public health jurisdictions, the Case Surveillance-Based Sampling project, 2012-2013^a

Data Source^b	No. (%) of Sampled People for Which Data Source Was Queried (n = 1793)	No. (%) of Sampled People for Which Data Sources Were Accurate^c (n = 1793)
HIV health care facility^d	1111 (62)	628 (35)
Sexually transmitted disease or partner services	1034 (58)	90 (5)
People-search engines (eg, LexisNexis, Spokeo, Metrosearch)	861 (48)	135 (8)
Integrated disease surveillance system	688 (38)	355 (20)
Internet (eg, Google, 411, Whitepages.com)	602 (34)	77 (4)
Ryan White administrative database	555 (31)	126 (7)
Prisons or jails	504 (28)	6 (<1)
Supplementary HIV laboratory surveillance database^e	259 (26)	85 (9)
Social services databases	361 (20)	99 (6)
AIDS Drug Assistance Program list	65 (4)	20 (1)

Abbreviation: HIV, human immunodeficiency virus.

^aThe Case Surveillance-Based Sampling (CSBS) project collected behavioral and clinical data on people diagnosed with HIV and data on recruitment efforts used by CSBS staff members to locate and contact 1800 sampled people. These data were used to assess the accuracy of contact information in HIV case surveillance and additional data sources and to determine whether time since diagnosis was associated with more accurate contact information in HIV case surveillance and successful contact. The 4 jurisdictions were the Los Angeles County Department of Public Health, New York City Department of Health and Mental Hygiene, San Francisco Department of Public Health, and Washington State Department of Health.

^bData for infrequently used data sources are not shown.

^cAccurate information is defined as a telephone number or address that led to the successful contact of a person.

^dThe person had an HIV health care facility listed in HIV case surveillance that was the facility where he or she currently sought care.

^eOnly reported in 2013; denominator is 993.

Table 3.

Number and percentage of sampled people living with HIV for which data sources were queried in 4 US public health jurisdictions, the Case Surveillance-Based Sampling project, 2012-2013^a

	Jurisdiction, No. (%)
Data Source Queried	Los Angeles County Department of Public Health	New York City Department of Health and Mental Hygiene	San Francisco Department of Public Health	Washington State Department of Health
Total	400	500	393	500
People-search engines (eg, LexisNexis, Spokeo, Metrosearch)	209 (52)	269 (54)	203 (52)	180 (36)
Sexually transmitted disease/partner services	283 (71)	457 (91)	169 (43)	125 (25)
Supplementary HIV laboratory surveillance database^b	180 (90)	0	0	79 (26)
HIV health care facility^c	199 (50)	318 (64)	320 (81)	274 (55)
Ryan White administrative database	332 (83)	0	112 (29)	111 (22)
Prisons or jails	0	486 (97)	5 (1)	13 (3)
Internet (eg, Google, 411, Whitepages.com)	0	440 (88)	80 (20)	82 (16)
Integrated disease surveillance system	195 (49)	490 (98)	1 (<1)	2 (<1)
Social services	0	361 (72)	0	0

Abbreviation: HIV, human immunodeficiency virus.

^aThe Case Surveillance-Based Sampling (CSBS) project collected behavioral and clinical data on people diagnosed with HIV and data on recruitment efforts used by CSBS staff members to locate and contact 1800 sampled people. These data were used to assess the accuracy of contact information in HIV case surveillance and additional data sources, to determine whether time since diagnosis was associated with more accurate contact information in HIV case surveillance and successful contact, and to assess how additional data sources that were queried varied by jurisdiction.

^bOnly reported in 2013; denominators for Los Angeles County Department of Public Health and Washington State Department of Health are 200 and 300, respectively.

^cThe person had an HIV health care facility listed in HIV case surveillance that was the facility where he or she currently sought care.

Among additional data sources queried, HIV health care facilities (628/1793, 35%), integrated disease surveillance systems (355/1793, 20%), a supplementary HIV laboratory surveillance database (85/993, 9%), and people-search engines (135/1793, 8%) most often provided accurate contact information (Table 2).

Use of Additional Data Sources to Contact Sampled People

Fifty-two percent (552/1063) of people contacted had an accurate telephone number or address in any additional data source with no accurate telephone number or address in HIV case surveillance (Table 1). The benefit of using additional data sources varied by jurisdiction. In SFDPH, 191 of 247 (77%) people were contacted using information found in additional data sources. However, only 40% (130/324) of people in NYC DOHMH were contacted using information found in additional data sources (Table 1).

Associations Between Time Since Diagnosis and Accurate Personal Information in HIV Case Surveillance and Successful Contact

Seventy-two percent (128/179) of people diagnosed <1 year before the sampling date were successfully contacted, compared with 61% (439/717) of people diagnosed 1 to 5 years before the sampling date and 55% (496/897) of people diagnosed >5 years before the sampling date. People who were diagnosed <1 year before the sampling date were significantly more likely to have been contacted than people who were diagnosed ≥1 year before the sampling date (Cochran–Armitage trend test, P < .001) (Table 4).

Table 4.

Association between time since diagnosis and (1) contact made with sampled person, (2) accurate personal information in HIV case surveillance, and (3) accurate personal information in additional data sources only among people living with HIV in 4 US public health jurisdictions, the Case Surveillance-Based Sampling project, 2012-2013^a,b

Time Since Diagnosis	No. of People Sampled	Contact Made With the Sampled Person, No. (%)^c	Accurate Personal Information in HIV Case Surveillance, No. (%)^d	Accurate Personal Information in Additional Data Sources Only, No. (%)^c,e
<1 y	179	128 (72)	74 (58)	54 (42)
1-5 y	717	439 (61)	221 (50)	218 (50)
>5 y	897	496 (55)	216 (44)	280 (56)
Total	1793	1063 (59)	511 (48)	552 (52)

Abbreviation: HIV, human immunodeficiency virus.

^c P < .001 for differences among times since diagnosis; Cochran–Armitage trend test.

^dAccurate personal information is defined as a telephone number or address that led to the successful contact of a person. P = .002 for differences among times since diagnosis; Cochran–Armitage trend test.

^eNo accurate telephone number or address in HIV surveillance. However, there was an accurate telephone number or address found in any additional data source.

Fifty-eight percent (74/128) of people diagnosed <1 year before the sampling date had accurate personal information in HIV case surveillance, compared with 50% (221/439) of people diagnosed 1 to 5 years before the sampling date and 44% (216/496) of people diagnosed >5 years before the sampling date. People who were diagnosed with HIV <1 year before the sampling date were significantly more likely than people who were diagnosed ≥1 year before the sampling date to have accurate personal information in HIV case surveillance (Cochran–Armitage trend test, P = .002) (Table 4).

The benefit of using additional data sources was greater for people diagnosed >5 years before the sampling date than for people who were diagnosed ≤5 years before the sampling date. An additional 56% (280/496) of people diagnosed >5 years before the sampling date were contacted using information from additional data sources, compared with 50% (218/439) of people diagnosed 1 to 5 years before the sampling date and 42% (54/128) of people diagnosed <1 year before the sampling date (Cochran–Armitage trend test, P < .001) (Table 3).

Discussion

Our findings indicate that HIV case surveillance and HIV health care facility data were the most helpful data sources for locating PLWH. However, we had to use additional data sources when HIV case surveillance could not provide up-to-date contact information.

Accuracy of telephone numbers and addresses in HIV case surveillance varied across jurisdictions, perhaps because of differences in the quality and use of laboratory surveillance data. Health care providers, laboratories, and health department staff members should ideally collect and import updated contact information into the local HIV registry. However, jurisdictions have varying practices when importing laboratory data into local HIV registries, making updated contact information unavailable or difficult to access. In addition, laboratories that report HIV laboratory results to jurisdictions may not report patient contact information if not mandated by law. Thus, the accuracy and completeness of contact information may also vary by jurisdiction. Routine collection and importation of accurate contact information into local HIV case surveillance registries would make registries more successful in locating and contacting PLWH for public health outreach.

Challenges in the collection of contact information by health care providers and health department staff members for HIV case surveillance also exist. People with unstable housing, homeless people, and/or those with undocumented immigrant status may provide false contact information to medical providers. Contact information in medical records and laboratory data and, subsequently, HIV case surveillance may be inaccurate for these people.

Health care facility information in HIV case surveillance was accurate for most people, which meant that CSBS staff members could contact the facility to gather current contact information from the patient’s medical record. Gathering contact information from health care facilities was possible because CSBS staff members had HIV surveillance authority. Once CSBS staff members obtained updated contact information, successful recruitment of people into CSBS typically followed. Staff members’ success lay in their ability to leverage existing relationships with facilities to gather contact information. In addition, staff members at some health care facilities contacted patients directly to recruit them into the project. Access to electronic medical records also allowed for successfully contacting people once facilities were identified.

People diagnosed recently were more likely to have accurate contact information in HIV case surveillance and to be contacted than people who were diagnosed less recently. The Never in Care Pilot, which used surveillance data to investigate reasons for delayed entry into care, also found low contact rates among people diagnosed earlier and partly attributed this finding to incorrect contact information in surveillance.¹⁰ Data to Care programs generating lists of people who need HIV care may find that HIV case surveillance may be better for locating recently diagnosed people, whereas additional data sources and enhanced efforts are better for finding people who are diagnosed less recently. In addition, people diagnosed less recently have had more time to move outside of the jurisdiction listed in HIV case surveillance (ie, residence at HIV or AIDS diagnosis), and their contact information may not have been updated to reflect this move. Out-migration, or the relocation of PLWH from one jurisdiction to another, poses a particular challenge to locating and contacting PLWH who are diagnosed less recently.^6,11,16

Practice Implications

Use of HIV case surveillance for linkage or reengagement in HIV care is increasing.¹ However, our analysis found that HIV case surveillance contains insufficient data to locate and contact many PLWH. Our data suggest the need to use multiple data sources in addition to HIV case surveillance. CSBS staff members increased the number of people contacted by using additional data sources, such as people-search engines and STD/partner services databases. These findings are congruent with findings from similar projects.⁶ Developing new or expanded access to data sources such as electronic medical records or social services databases may improve success in contacting PLWH for linkage and reengagement outreach.

Understanding the usefulness of data sources to which health departments have access is important. Collecting and tracking the accuracy of data sources used allows health departments to determine which data sources are useful and which are not. Searching every data source for every person is not feasible because of limited resources; thus, health departments could prioritize searching additional data sources for people with more longstanding HIV. Last, the difference in data sources queried among jurisdictions indicates that gathering contact information is not a one-size-fits-all approach.

Limitations

This analysis had several limitations. CSBS staff members queried data sources until they located a person. The order in which each jurisdiction searched additional data sources varied, and the suspected accuracy and/or difficulty in accessing the data source influenced the order. Thus, our data may not fully represent a data source’s ability to locate a person. Moreover, the data sources used reflect the resources and partnerships available to each jurisdiction. Data source availability and quality may not be generalizable to other health departments. Nonetheless, jurisdictions often began their searches with contact information in HIV case surveillance. Ideally, it would have been helpful to evaluate each data source on each sampled person; however, CSBS was not designed to measure the usefulness of every data source. Despite these limitations, having knowledge of the usefulness of various data sources will be useful to programs attempting to locate PLWH for public health purposes.

Conclusion

Although certain contact information is unavailable in HIV case surveillance data, the data still proved useful in locating PLWH, including PLWH who were out of care. Our findings demonstrate the need for improved completeness and accuracy of contact information if public health officials continue to use HIV case surveillance for linkage to and reengagement in HIV care, which has the potential to reduce HIV incidence in the United States and optimize the health outcomes of PLWH. As surveillance programs work on collecting improved contact information, other data sources will continue to be necessary.

Footnotes

Acknowledgments

The authors thank participating CSBS patients and project areas, the Medical Monitoring Project Provider and Community Advisory Board members, and the contributions of the Clinical Outcomes Team and Behavioral and Clinical Surveillance Branch at CDC and CSBS Project Area staff members.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for the Medical Monitoring Project is provided by a cooperative agreement (PS09-937) from CDC.

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