Tremendous strides have been made in the diagnosis and treatment of human immunodeficiency virus (HIV); perhaps now the largest barrier to controlling HIV is retaining those diagnosed in care. Data on out-of-care populations are needed to develop effective retention methods, yet obtaining these remains methodologically challenging due to inherent difficulties in sampling. The purpose of this study was to evaluate whether individuals identified by two sampling methods commonly used to approximate out-of-care populations were significantly different from a sample of newly identified out-of-care persons. We compared medical records of 345 out-of-care persons identified by a novel population-based health information exchange who had not received CD4 or viral load monitoring in >1 year with: medical records from a randomly selected, time-matched sample of 488 HIV-infected persons with at least one HIV care visit in the past 5 years, and interviews with 382 participants from a time-matched clinic-based convenience sample. Newly identified out-of-care persons were significantly different from both proxies with respect to demographic, clinical, and utilization characteristics, suggesting that samples of in-care proxy persons are inadequate to describe those not engaged in care. Novel approaches to sampling out-of care populations are urgently needed in order to better understand these populations and ways to improve retention and slow the HIV/AIDS epidemic.

Retention in HIV treatment may reduce morbidity and mortality, as well as slow the epidemic. Myriad barriers to retention include stigma, homophobia, structural barriers, transportation, and insurance. The purpose of this study was to evaluate patient perceptions of provider attitudes among HIV-infected persons within a state-wide public hospital system in Louisiana. A convenience sample of patients attending HIV clinics throughout the state participated in an anonymous interview. Factors associated with negative perceptions of care were evaluated in conjunction with a validated stigma measure. Factors associated with having a delayed entry into or break in care were evaluated in conjunction with perceived stigma. Between 2/1/09 and 7/31/11, 479 participants were interviewed and had sufficient data available, of whom 53.4% were male, 79.3% were African American, and 29.4% reported a break or delayed entry into HIV care of >1 year. A break in care was associated with perceiving that the doctor or health professionals do not listen carefully most or all of the time (p<0.01), having an elevated stigma score (p<0.05), and indicating that providers dislike caring for HIV-infected people (p<0.01). Women were more likely to have an elevated stigma score than men (p<0.01), as were participants over 30 (p<0.01); those with a gay/bisexual orientation (p<0.05) were less likely to have an elevated stigma score. Those with a break in care were less likely to have Medicaid (p<0.05). Providers play a key role in the retention of HIV-infected persons in care and are critical to improving outcomes and slowing the epidemic. Development of novel approaches to reduce stigma are imperative in improving retention.

Background: The medical home is an organizational approach for improving care, improving patient experience, and reducing costs. The purpose of this qualitative project was to obtain input from patients that could be used to improve their experiences in the medical home for ongoing disease management and health improvement and to obtain their recommendations for the most effective methods to involve patients in shaping system policies, procedures, and practices consistent with patient-and family-centered care principles.Methods: We conducted cognitive interviews to complete patient experience surveys, structured focus groups, and exit surveys. A sample of 32 adults participated in cognitive interviews (n = 15) and structured focus groups (n = 17) using the nominal group technique (NGT). Exit surveys collected demographic information and input from patients about opportunities for their involvement in shaping medical homes.Results: Cognitive interviews, NGT sessions, and exit surveys revealed patient-perceived strengths and inadequacies within the medical home. Better access to care, including more efficient appointment scheduling and reduced wait times to see a physician once patients arrived for scheduled appointments, was identified as a necessary improvement. Patients' positive perceptions included how the medical home helps them reach their health goals and their overall satisfaction with the quality of care received.Conclusion: The input received from patients through the methods used in this project was useful in revealing needed improvements within a medical home and, if resolved, will ensure that all patients have access to the kind of care that works for them.

PURPOSE:The purpose of this study was to evaluate HIV-related outcomes associated with use of a novel public health information exchange that was designed to identify out of care HIV-infected individuals seen within a large, integrated delivery network (IDN). METHODS:A novel, secure, bidirectional health care delivery-public health information exchange, the Louisiana Public Health Information Exchange (LaPHIE) was developed between a multi-geographical IDN and the Louisiana public health authority in response to the high proportion of out of care HIV-infected persons. The system provides real-time provider alerts when any HIV-infected person who has not had CD4 or HIV viral load (VL) monitoring in >1 year receives non-HIV care within the IDN, allowing immediate linkage to HIV specialty care. Persons identified over the first 30 months of the system's implementation were characterized using a case-cohort approach to compare out-of-care individuals with randomly sampled, time-matched in-care controls. RESULTS:Between 2/1/09 and 7/31/11, 549 alerts identified 419 unduplicated HIV-infected individuals without a CD4 count or VL in >1 year. Patients were identified at 60 clinics and alerts shown to 223 clinicians in 7 participating facilities. A quarter (24%) of those identified had not had a CD4 count or VL conducted since their initial diagnosis. Of the remaining 76% who had been in care previously, over half (55%) had been out of care for ≥18 months, with a median time of 19.4 months [IQR 15.0-32.5] since their previous visit. Following LaPHIE identification, 42% had CD4 counts<200 cells/mm(3) and 62% had VL>10,000 RNA copies/mL. Of the 344 patients with at least 6 months of follow up, 85% had at least one CD4 and/or VL test after being identified. CONCLUSIONS:The results of this study demonstrate that an information exchange can effectively facilitate engagement, re-engagement, and retention of out-of care HIV-infected persons in HIV specialty care. Within two years, we were able to observe significant improvements in HIV-related utilization and disease progression indices. Future programs should consider adopting this innovative strategy to improve HIV care at both the individual and population levels.

Louisiana is severely affected by HIV/AIDS, ranking fifth in AIDS rates in the USA. The Louisiana Public Health Information Exchange (LaPHIE) is a novel, secure bidirectional public health information exchange, linking statewide public health surveillance data with electronic medical record data. LaPHIE alerts medical providers when individuals with HIV/AIDS who have not received HIV care for > 12 months are seen at any ambulatory or inpatient facility in an integrated delivery network. Between 2/1/2009 and 1/31/2011, 488 alerts identified 345 HIV positive patients. Of those identified, 82% had at least one CD4 or HIV viral load test over the study follow-up period. LaPHIE is an innovative use of health information exchange based on surveillance data and real time clinical messaging, facilitating rapid provider notification of those in need of treatment. LaPHIE successfully reduces critical missed opportunities to intervene with individuals not in care, leveraging information historically collected solely for public health purposes, not health care delivery, to improve public health.

Health information technology (HIT) offers the potential to improve care for persons living with HIV. Provider satisfaction with HIT is essential to realize benefits, yet its evaluation presents challenges. An HIV-specific, electronic clinical management and reporting system was implemented in Louisiana's eight HIV clinics, serving over 7500. A serial cross-sectional survey was administered at three points between April 2002 and July 2005; qualitative methods were used to augment quantitative. Multivariable methods were used to characterize provider satisfaction. The majority of the sample (n = 196; T-1 = 105; T-2 = 46; T-3 = 45) was female (80.0%), between ages of 25 and 50 years (68.3%), frequent providers at that clinic (53.7% more than 4 days per week), and had been at the same clinic for a year or more (85.0%). Improvements in satisfaction were observed in patient tracking (p < 0.05), distribution of educational materials (p < 0.04), and belief that electronic systems improve care (p < 0.05). Provider self-reports of time to complete critical functions decreased for all tasks, two significantly so. Time (in minutes) to find current CD4 count decreased at each time point (mean 3.9 [standard deviation {SD} 5.8], 2.9 [2.3], 2.1 [2.6], p > 0.05), current viral load decreased at each time point (mean 4.0 [SD 5.6], 2.9 [2.5], 1.8 [2.6], p = 0.08], current antiretroviral status decreased at each time point (mean 3.9 [SD 4.7], 2.9 [3.7], 1.5 [1.1], p < 0.04), history of antiretroviral use decreased at each time point (mean 15.1 [SD 21.9], 6.0 [5.4], 5.4 [7.2], p < 0.04]. Time savings were realized, averaging 16.1 minutes per visit (p < 0.04). Providers were satisfied with HIT in multiple domains, and significant time savings were realized.

Background: Although information technology (IT) plays an increasingly important role in the delivery of healthcare, specific guidelines to assist human immunodeficiency virus (HIV) care settings in adopting IT are lacking. Methods: Through the experiences of six Special Projects of National Significance-(SPNS) funded HIV-specific IT interventions, key considerations prior to adoption and evaluation of IT are presented. The purpose of this article is to provide guidelines to consider prior to adoption and evaluation of IT in HIV care settings. Results: Six sites conducted comprehensive evaluations of IT interventions between 2002 and 2005, encompassing care delivered to 24,232 clients by 700 providers. Six key considerations prior to adoption of IT in HIV care delivery were identified, including IT and programmatic capacity, expectations, participation, organizational models, end-user types, and challenges. Specific evaluation techniques included implementation assessment, formative evaluation, cost studies, outcomes evaluation, and performance indicators. Grantee experiences are used to illustrate key considerations. Discussion: With proper preparation, even resource-poor HIV care delivery programs can successfully adopt IT.