Health Policy 78 (2006) 101–110 HIV surveillance in theory and practice: Assessing the acceptability of California’s non-name HIV surveillance regulations Kimberly A. Koester ∗ , Andre Maiorana, Karen Vernon, Edwin Charlebois, Stuart Gaffney, Tim Lane, Stephen F. Morin Center for AIDS Prevention Studies, University of California, 74 New Montgomery St., Suite 600, San Francisco, CA 94105, USA Abstract In 2002, California adopted a non-name system for HIV case reporting. This study focused on the acceptability of a non-name reporting system among key stakeholders implementing the system. We conducted qualitative research during the pre- and post-implementation period of the non-name HIV reporting regulations. During both study periods we conducted key informant in-depth interviews (n = 48 and 52, respectively) with health department surveillance staff, laboratory personnel, health care providers and clinic staff; and we conducted four focus group discussions (n = 28 and 30, respectively) with representatives of community-planning group members and advocacy groups. We found that overall, California’s non-name HIV reporting regulations were acceptable to most key stakeholders. Acceptability of a non-name system was highest among advocates and healthcare providers. Views of health department staff varied across the four counties, with some expressing a strong preference of a names based system and others accepting the non-name system. © 2005 Elsevier Ireland Ltd. All rights reserved. Keywords: HIV infection; HIV reporting; Evaluation of state health policy 1. Introduction The guiding principle and purpose of public health surveillance is to monitor diseases and to create population-based disease-control programs [1]. The U.S. National Notifiable Disease Surveillance System, located within the Division of Public Health Surveillance and Informatics, recommends that 61 diseases be ∗ Corresponding author. Tel.: +1 415 597 9116; fax: +1 415 597 9213. E-mail address: kkoester@psg.ucsf.edu (K.A. Koester). voluntarily reported to the Centers for Disease Control and Prevention (CDC) [2]. In 1999, after approximately two decades of voluntary tracking of AIDS cases by name, the CDC recommended that states expand their surveillance activities to incorporate HIV infections. The success of improved treatment of HIV/AIDS and subsequent decrease in the volume of AIDS cases, prompted concerns that surveillance of AIDS cases alone failed to account for current trends in the epidemic [3–6]. Although HIV/AIDS activists, advocates, scientists and healthcare professionals agree on the importance 0168-8510/$ – see front matter © 2005 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2005.09.006 102 K.A. Koester et al. / Health Policy 78 (2006) 101–110 of monitoring the epidemic based on HIV rather than AIDS case reports, [5,7] there is and has been considerable debate regarding the best method of HIV case reporting. The persistence of stigma and discrimination associated with HIV/AIDS continue to set this disease apart from other diseases [7]. Yet a division remains whether HIV surveillance should be based on reports using the names of those infected or utilize non-name codes that cannot be traced to an individual. Proponents of name-based reporting argue non-name data will: (1) be less accurate and more prone to duplication of cases (2) be less efficient to collect and (3) hamper important ancillary services such as partner notification or referrals to care [3,8]. Proponents of a non-namebased method argue: (1) confidential HIV testing may be avoided due to fears associated with name-based method and (2) name-based reporting may raise doubts or mistrust regarding confidentiality of one’s HIV status [9–11]. The lack of consensus on reporting methods is evidenced by the diversity of systems in place throughout the United States and its’ territories. While 38 states use a name-based system to report HIV cases, seven states and the District of Columbia adopted a non-name (NN) coded system, and five states adopted a name-to-code system. HIV activists, primarily in San Francisco, New York, and Philadelphia have been most vocal in their opposition to name-based reporting and in advocating that their states adopt non-name systems. Accordingly, the states with the highest HIV/AIDS incidence were slow to implement HIV name reporting [3]. An unusual intra-state dual reporting system illustrates the power of advocacy, in April 2004 the Health Secretary of Pennsylvania granted the city of Philadelphia permission to use a NN code system, while the rest of the state reports HIV by name [12]. Historically, HIV advocates in California have opposed the idea of a name-based reporting system primarily because of concerns related to confidentiality. Yet, in 2002, after several failed attempts to pass similar legislation, the California legislature agreed on a compromised position; they approved a non-name system. While this legislation was not ultimately signed, a non-name coded system was implemented through regulations. A primary motivation leading to this decision was to maintain the privacy of individuals seeking HIV testing and to encourage, rather than discourage testing. Additionally, results from an evaluation of a similar unique identifier system in Maryland demonstrated the accuracy, timeliness and valid nature of the data collected using a non-name surveillance system [13]. Similar to Maryland’s system, the implementation of the California HIV reporting regulations by nonname code rely on the collaboration and combined effort among the staff of health departments, labs and healthcare providers [14]. The non-name code (NNC) is comprised of a patient’s Soundex, a seventeen digit code consisting of a four digit alphanumeric code derived from the patient’s last name, date of birth, gender and last four digits of the patient’s social security number. Code components are assembled in the following order: (1) healthcare provider sends the patient blood specimen, the patient’s last name, date of birth and gender to the laboratory. (2) The laboratory generates a Soundex for every confirmed HIV test and sends this information (confirmed report and Soundex) back to the healthcare provider and to the local health department. (3) The NNC is complete once the healthcare provider adds the last four digits of the social security number and then submits the NNC and a confidential case report form to the local health department [15]. Local health department forward this data on to the California State Office of AIDS (CSOA) within 45 days of receiving the report. The state was responsible for evaluating the new system following criteria set by the CDC for completeness, timeliness, and accuracy. In addition to the study of compliance issues, the state was equally concerned about the acceptability of an HIV reporting system among stakeholders involved in the implementation process and in understanding acceptability from the test-takers perspective. We designed our mixed methods evaluation to study the acceptability issues raised by the state. In an earlier paper we reported on strong support and a significant preference for a non-name code reporting system among HIV test-takers in California [14]. In this analysis we specifically set out to understand the views of those mandated to implement the regulations in a sample of four key stakeholder groups: health department staff, laboratory staff, healthcare providers, and HIV/AIDS advocates. Specifically, we set out to (1) assess knowledge of the proposed regulations, (2) evaluate the acceptability of the regulations, (3) assess the barriers and facilitators related to compliance with 103 K.A. Koester et al. / Health Policy 78 (2006) 101–110 the regulations, and (4) identify needs for training and technical assistance related to program operation. Table 1 Participants pre-implementation phase 1 County Providers Lab staff 2. Methods 2.1. Study design In this study we used qualitative in-depth interviews and focus group discussions designed to capture views across four groups of key stakeholders in four counties. This approach was appropriate because the success of the new HIV surveillance system is dependent upon the cooperation of each of the stakeholders interviewed. The qualitative data, were collected and analyzed using a rapid assessment process (RAP). RAP is a highly efficient methodology to study complex policy situations in an intensive and timely manner. Our research process included the essential characteristics of RAP: an iterative process of data collection and analysis and a multidisciplinary research team, necessary to triangulate data [16]. 2.2. Setting This study was undertaken in four counties: Fresno, Los Angeles, Riverside and Santa Clara and was conducted between May 2002 and July 2003. Counties were selected in conjunction with California Department of Health Services to reflect the diversity of HIV risk populations in California and different geographical areas of the state. The state facilitated the collaboration and participation of the counties in our study. The study consisted of two phases of data collection: phase 1 began in May 2002 prior to the start of the new regulations in June 2002, and phase 2 began in May 2003 after 1 year of program implementation. Fresno Los Angeles Riverside Santa Clara Total Health department staff Advocates 5 8 9 4 2 1 2 2 5 5 3 2 4 6 7 11 26 7 15 28 private space at the workplace of the informant. Interviewers followed a semi-structured interview guide and the interviews typically lasted about 45 min. Focus groups lasted about 2 h and were conducted at rented space or other space provided by local agencies. Consistent with qualitative techniques, we employed a purposeful sample of key informants in each of the four counties [17,19]. Specifically, we spoke to informants that were either directly involved with reporting or indirectly supervising or overseeing the reporting procedures. Potential lab, healthcare provider, health department staff, and co-chairs of HIV community-planning group participants were identified based on these criteria with the assistance of a list provided by the local health departments. The co-chairs of the local HIV community-planning group were asked to attend a focus group discussion and to assist with identifying other community advocates or staff such as HIV counselors or their supervisors at agencies providing HIV testing for the focus groups. In addition, for selection of all participants, we used a snowballing technique to complement the original list of potential participants provided by the health departments. Please see Tables 1 and 2 below for the total number of participants in phases I and II. 2.3. Sample and data collection Table 2 Participants post-implementation phase II We used two primary data sources for each phase of qualitative data collection: key informant in-depth interviews with health department surveillance staff, laboratory personnel, health care providers and clinic staff, and focus group discussions with representatives of community-planning groups, advocacy groups, and staff of different agencies in charge of implementing the system. Interviews were conducted in person, in a County Fresno Los Angeles Riverside Santa Clara Total Providers Lab staff Health department staff Advocates 4 7 9 6 2 3 2 2 4 5 5 3 10 8 6 6 26 9 17 30 104 K.A. Koester et al. / Health Policy 78 (2006) 101–110 Fig. 1. Knowledge continuum. Two staff members of the San Francisco Health Department conducted all interviews with health department surveillance staff. University of California San Francisco (UCSF) researchers conducted all other interviews and focus groups. In preparation for the study, UCSF staff attended an HIV Reporting Regulations Training conducted by Education Training Resources (ETR), a company under contract with the state to provide training and technical assistance on the new system. Our research team informed by the training and based on study objectives developed interview guides.1 During the pre-implementation phase we asked questions related to implementation i.e., role in reporting, knowledge of regulations, description of anticipated reporting process, training needs, concerns about the potential harm as well as the benefits of the non-name reporting system. During postimplementation interviews we asked participants to describe their experiences with implementing the regulations and the emergence of unanticipated issues, and to reflect on whether or not they felt the regulations were “worth it” considering the additional amount of work entailed. Interviews and focus groups were audiotaped. Interviewers wrote extensive fieldnotes immediately following each interview and participated in a team de-briefing session with the lead analyst upon return from the field. The study was reviewed and approved by the Internal Review Board at the University of California San Francisco. We offered compensation to lab staff, providers, and advocates for their participation. Health department staff were not compensated for their participation and in some cases lab staff were unable or unwilling to accept reimbursement. 2.4. Data analysis Transcribed interviews and focus group discussions as well as fieldnotes were entered into Ethnograph, a qualitative software product used to facilitate the organization of data. Analysis of the data began with an a 1 Interview guides are available upon request. priori list of key domains of interest based on the structure of the interview guides. A team of five analysts then engaged in a collaborative open coding process of one randomly selected transcript from each stakeholder group. We refined our a priori domains of interest collectively and devised a set of codes that allowed us to identify general themes in the data. The research team met weekly to compare coding experiences and to continue refinement of the codebook. Each interview was coded and verified by a second reviewer to ensure validity. The major thematic areas of concern were summarized and entered into matrixes to allow crossclassification and to visually display the data analysis. 3. Findings 3.1. Phase I—pre-implementation 3.1.1. Knowledge of regulations Knowledge regarding the purpose, intent of the regulations, and process of filing case reports across the four groups was inconsistent. Those with the most extensive understanding of the regulations provided details about the system including: outlining the duties associated with the labs, healthcare providers and health department, spelling out the components of the Soundex, articulating the timeline expectations and explaining the general purpose for reporting HIV cases. Those with the least amount of knowledge knew nothing at all, understood conceptually a new reporting process would be implemented soon, or were awaiting information or further instructions. In most cases, the health department staff were the most informed of the four groups while community advocates participating in focus groups were the least informed. Fig. 1 illustrates the groups plotted out along a “knowledge continuum”. Health department staff had the most extensive knowledge including detailing the purpose and process of reporting. While lab staff were not as informed about the purpose of the non-name reporting process, overall K.A. Koester et al. / Health Policy 78 (2006) 101–110 they understood the process of reporting and their role in that process. Many providers had yet to receive any training and a few clearly had almost no information prior to being interviewed for this project.2 In general, members of community-planning working groups had relatively more information than other focus group participants because of their participation in HIV/AIDS policy and funding-related meetings. For many advocates, however, the discussion during the focus group was their first opportunity to access more concrete information about the system. 3.1.2. Acceptability of regulations We analyzed responses raised under the domain of implementation concerns about the non-name system in order to assess the characteristics and themes associated with acceptability of the non-name system. Acceptability of the pending surveillance regulations differed across and within groups and counties. However, many participants responded to our specific queries about the non-name system in the more general context of HIV surveillance. For example, health department and laboratory staff expressed a solid endorsement for HIV surveillance generally, which seemed to inspire high levels of acceptability of the non-name HIV surveillance regulations specifically. On the other hand, healthcare providers and community advocates expressed either skepticism or a great deal of concern about the safeguards of patient confidentiality in HIV surveillance generally, which seemed to inspire high levels of acceptability of the non-name HIV surveillance regulations specifically. The following quotes help to illustrate the perspective of each stakeholder. Health department staff in three of the four counties accepted the new regulations as part of their role and many wanted a version of HIV reporting implemented sooner. I: What do you think about the new HIV non-name system? P: I’ve always felt we needed it anyway because I’ve been with the program for about 5 years. I’ve always 2 We began data collection 2 months prior to the implementation of the regulations. All stakeholders were informed of the changes by mail. Formal trainings run by education, training, resources (ETR), a professional training service based in California, were being conducted in various parts of the State at the time of data collection. 105 known we’ve missed a lot of people with just AIDS. They weren’t reportable at that time but if we just want an accurate database then you need the HIV patients. Because I know we have quite a few HIV as compared to AIDS patients that are on medications and doing pretty well. That’s about it. (Surveillance supervisor). Health department staff in one county felt the regulations were inadequate as a public health prevention tool. Therefore, they preferred a name-based system. I think it’s better than not at all, and I think it will result in us being able to reach some people that we haven’t been able to reach before. Coming from a purely public health prevention standpoint I think it is not enough, . . .it’s never going to be even under control until we have full reporting. (Supervising public health nurse). Aside from brief endorsements of the regulations such as, “just part of doing business,” laboratory staff had very little to say on the subject of acceptability. This reflects the fact that reporting and confidentiality are already embedded in laboratory procedures. One lab director perceived the regulations to be “overkill” citing the adequacy of existing confidentiality protections. We’re professionals. We were trained to do this type of work and we understand the need for anonymity. We understand reporting. We do it with all the other tests we do. It makes sense to us. (Lab director). Providers overall adopted a tolerant stance regarding the regulations and referring to the authority of the state one provider stated they “would be compliant with the powers that be.” However, consistent with their role as patient advocates, providers routinely raised concerns about patient acceptance of regulations. The following quote from a provider describes an impression of patients’ fears and misunderstandings associated with the concept of “reporting”: Patients in general are very hesitant to give out any kind of information that may be identifying in nature, even when they come here to receive medical services they attempt sometimes to give false names and false ID. And this is particularly true because we work with a large, undocumented population and they’re fearful 106 K.A. Koester et al. / Health Policy 78 (2006) 101–110 about getting reported [to Immigration and Naturalization Services] and the consequences of that. So now that we’re saying on top of everything else that we ask them that we’re going to have to report this to the government is a very, very scary statement. My inclination would be that they would have great reservation, even when we give them assurances that it’s going to be confidential. (Healthcare provider). increased resources and funding as well as a more consistent allocation of resources for prevention and care. Most community advocates agreed with the importance and the potential benefits of the regulations for better tracking of the epidemic in terms of funding and resource allocation. Yet, acceptance was tentative because they did not have enough specific information about the non-name system. As advocates they assumed they would need to inform clients themselves about the reporting system but they felt they needed to fully understand the system first in order to explain or “sell” the idea to potential testers. They expressed a sense of frustration because they lacked information about the regulations. 3.1.4. Barriers related to compliance and acceptability Health department staff had numerous concerns that primarily focused on the increased workload burden associated with complying with the non-name component of the regulations. Specifically, they anticipated non-compliance or poor compliance particularly by providers. They expected difficulties or confusion to arise due to the quantity of information necessary to completely file a case report and the length of the forms themselves. Health department staff questioned the ability of providers to collect or report on patient risk assessment and expressed concerns regarding the probability of duplicate reporting. In counties where the health department conducted active reporting, (visiting the clinics or providers and searching for the information to file a case report, rather than passively receiving the completed report), inadequate staffing was raised as a structural barrier. Lab personnel also focused on the problematic aspects of processing the reports. As with health department staff, labs raised similar concerns about the possibility of missing data, duplication of reports and provider compliance. However, some lab personnel also expressed pessimism regarding the flow and timeline of reporting. Further barriers were cited regarding the increased workload since some labs felt obligated to train providers, or felt the burden on the health department staff was too great. We have to wait to see just how our clients are going to accept the reporting system because one of the things that I’ve seen that is making our program successful is we’re providing anonymous testing and we do a lot of IDU testing and they specifically look for us ‘cause we do anonymous testing. So and they usually ask, one of the first questions is who are you going to report this to? And I mean, we tell them it’s for our own agency purpose, all the paperwork other than just some other data we report to the county. We keep all the paperwork within the agency. So we still have to wait to see what, how the actual clients that look for anonymous testing will take the reporting system. And that’s going to be, We just have to wait and see. (Community advocate). 3.1.3. Facilitators related to compliance and acceptability In addition to the high levels of acceptability of the non-name system, we identified a key facilitator we called surveillance optimism, stakeholders in general reported an expectation of increased financial benefits as a result of the reporting system. Community advocates and some providers, especially those residing in counties they perceived to be under-funded, expected the reporting system to produce better surveillance, Well, that you know the extent of the problem. That’s really what it is. And of course to get money for it. The monies that are coming. I know that’s the bottom line, for good reason. We do need the monies to take better care of the problem. (Infection control practitioner). There is no clinician I know of that’s going to complete this form (HIV case report). At 6-point font, that reads like the Federal Register. No clinician is going to take the time to fill this out, but yet it’s required. (Lab director). Providers echoed the lab workers’ concerns about workload and complex and lengthy forms. Addition- K.A. Koester et al. / Health Policy 78 (2006) 101–110 ally, providers expressed a critical need for more information and training about the new regulations as well as more public education about non-name HIV reporting. Community advocates’ concerns related to the lack of information available to agencies and the challenges of implementing the system by 1 July 2002. Advocates also expressed concern over a potential decrease in testing due to fear of reporting and an existing mistrust of the government among their constituencies. Advocates feared that the HIV reporting system could undermine the existing rapport with their communities or clients. 3.1.5. Training needs Training on the process and purpose of the regulations was consistently identified as an overwhelming need across the groups and counties. Providers and community advocates wanted information on educating or reassuring clients. They recommended the development of written materials that they could provide to clients. Furthermore, community advocates expected leadership at the state level, information about the regulations and resources to distribute to constituents explaining the shift to HIV reporting by non-name from the counties and the state. I just kind of need to know exactly what I need to do and what’s expected of me. I don’t necessarily think I need to go to a training meeting or anything like that, I don’t think. I just need to know exactly what I need to do and it will be fine. (Healthcare provider). 3.2. Findings phase II—post-implementation 3.2.1. Acceptability revisited Health Department staff were disproportionately affected by the regulations. Their duties often included visiting clinics and hospitals to conduct active disease reporting or to follow up on missing or incomplete data on the case reports or to train others to comply with the regulations. Despite expressed concerns about the increased workload and provider compliance during the pre-implementaion phase, health department informants reported rallying to implement the new regulations. Furthermore, concerns regarding accuracy and duplication diminished in the post-implementation phase. Laboratory informants reported smooth implementation of the regulations. Reporting went into effect as 107 planned with little strain. Many labs created their own user-friendly format to record Soundex information, rather than use the form provided by the state. Labs also continued to informally train providers when missing information was an issue. Providers were willingly compliant once the regulations went into effect, they would do whatever the state required and complying with the regulations simply became another procedure to follow. A wide variety of reporting processes were noted across the counties. In fact, implementation of regulations differed county to county with some clinics reporting actively and others passively. Acceptability among healthcare providers and clinic staff was especially high in sites where the Health Department conducted active reporting. However, those providers noted they might have felt differently if they had to complete the reporting without the assistance of the Health Department. Counselors in HIV testing facilities had immediate access to relevant risk information thus allowing them to efficiently complete the case report form. In contrast, clinics with a large patient population were struggling to complete a backlog of cases and locating accurate client risk information was sometimes very difficult. In these instances, risk information was not available since providers had not conducted a risk assessment as part of a routine confirmatory HIV test. The most significant shift in acceptance of the regulations occurred at the advocate level. In fact, community advocates consistently focused on pressing current events (conducted over the summer of 2003) such effect of the state’s financial situation on access to care and terrorism which had supplanted the fears and concerns regarding HIV surveillance expressed in the prior year. For those participants with access to or knowledgeable about anonymous testing sites, they believed that acceptance among HIV test-takers was high based on the lack of a noticeable increase in anonymous testing facilities. As one informant put it: “HIV reporting did not cause the sky to fall.” We observed a significant shift in emphasis in our interviews and focus groups during the postimplementation phase. We noted far fewer discussions of the primary objections e.g., inaccuracy, duplicate cases, inefficiency, to the non-name system. In fact some of the major concerns such as accuracy and duplicate cases dropped out entirely or were at least discussed with less intensity during implementation 108 K.A. Koester et al. / Health Policy 78 (2006) 101–110 interviews. Concerns about efficiency and workload remained constant from pre-implementation phase to implementation phase however, with a decrease in emphasis. Two excerpts from our field notes illustrate that the non-name system exceeded expectations: On missing information: Labs are doing very well. Works very well, who ever set it up, it’s working like a miracle. One or two here internally, the DOB was off, data entry error. Providers’ info more tricky, they have to be trained or just be followed up w/a phone call, especially risk factors, thought he’d have more problems with this. They emphasized this in trainings. They’re savvy, thought it was going to be worse. If anything’s missing, they’ll call and they’ll also go over to do training to help providers to fill out forms completely. A face-to-face contact is also beneficial to see each other and make a personal connection. (Health department staff fieldnote excerpt). Informant mentioned that people have become more compliant over time with providing the information necessary to complete the SOUNDEX. Duplicates for positive patients already reported are found because informant flags everyone that has already gone through the system, so it shows in the results database. (Lab staff fieldnote excerpt). 4. Discussion Overall, we found that acceptability for a non-name system was highest among advocates and healthcare providers while acceptance and resistance were both found for the laboratory and health department staff across the four counties. With this in-depth understanding and knowledge about each key stakeholder’s concerns, we can advance the discussion of HIV reporting. We observed a distinctive pattern in the perspectives of our informants. Health department and lab staff were most concerned about complying with the non-name component of the reporting system and criticized its potential for inefficiency, duplication of case reports and inaccurate data. Meanwhile, healthcare providers and community advocates were focused on the interpretation of any type of HIV reporting system by testers and the subsequent behavioral impact, potential to deter testing, increase anonymous testing and in general foster a disenfranchisement of those with unknown HIV status. One county was qualitatively different from the other three in that they consistently reported strong support for a name-based reporting system. In order to maintain the anonymity of the counties we presented these data in aggregate. All seemed to express some level of anxiety about the extra paperwork requirements imposed by the regulations. While the issue of whether or not name-based reporting deters testers has been the subject of much research, the results of this research are mixed [4–11]. It is difficult to draw conclusions from this literature because these studies have found that there exists a general lack of knowledge among consumers of HIV testing about their state’s HIV reporting regulations. Much of this confusion is perpetuated by the interchangeable use of the terms “HIV” and “AIDS” in media reports about the epidemic [20]. Privacy concerns resonate differently with various groups at risk for HIV depending on their residence in rural or metropolitan jurisdictions, mistrust of the government and authorities, integration into the health care system, existing relationship with other public health agencies, or with corrections and immigration agencies, and whether they are “out” about their HIV risk behaviors. We would encourage a closer or critical inspection of assumptions implicit in studies reporting no decrease in testing or even an increase in testing in states implementing HIV reporting. We argue that this does not necessarily indicate a tacit acceptance by testers. In fact, it is widely reported that persons seeking HIV testing are unaware of state policies regarding HIV reporting, this includes testers residing in California. A crucial question raised by Herek et al. in 2003 regarding the health benefits of HIV surveillance remains unanswered. We propose an exploration of this question as well as an in-depth qualitative exploration of what HIV reporting means to testers to better understand how they perceive and manage testing experiences in locations with and without name-based surveillance policies. This study has several limitations. Although we attempted to collect data to reflect the diversity of the State, our study was limited to four counties. Because we used qualitative methods, we cannot reach conclusions about the relative frequency of different views. We also do not have a standard measure of accept- K.A. Koester et al. / Health Policy 78 (2006) 101–110 ability. However, the goal of qualitative research is to provide context-specific, descriptive research that has significant meaning and value [21]. Within the literature on HIV surveillance an important aspect of a non-name reporting system has remained overlooked that of acceptability among those responsible for generating the HIV case reports. Our study makes a unique contribution to the field of HIV surveillance because of the distinct sample and methodology used to study this very question of acceptability. Our research allowed us to investigate the context in which HIV reporting is carried out and to better understand how health department officers, lab workers, community advocates, and health care providers balance privacy concerns against efficiency and accuracy of a reporting method. The state is well aware that implementation and adherence to California’s HIV reporting regulations requires a high-level of cooperation among three distinct actors: health department, laboratories and health care providers. Acceptance of the non-name regulations was and remains paramount to successful implementation. Our findings revealed that key informants across each category acknowledged the importance of HIV surveillance as a tool to enhance disease control. Additionally, our findings reflect the reality of varying levels of knowledge and understanding about the pros and cons of reporting HIV by a non-name code. Understandably, each key stakeholder’s perspective was shaped by their role within the reporting process and their proximity to clients or patients most likely to seek out HIV testing. However, underlying the debate over the best method of HIV surveillance are pressures related to resource allocation. Funding formulas for treatment and prevention of HIV/AIDS were previously calculated based on estimated AIDS cases, but may rely more heavily on HIV cases in the future. Our findings concerning the “surveillance optimism” expressed by some key stakeholders potentially represents a false expectation; in the absence of increased funding, a new surveillance system would only result in a redistribution of funds with unknown consequences for each county. 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