Using Existing Datasets for Local Evaluation Studies of the CARE Act Computerized Networking of HIV Providers Workshop May 8, 2003

Local Evaluation Studies  Competitions initiated in FY 1997  Open to CARE Act grantees and providers  Focused topics  RFQs submitted, reviewers selected  Applicants had to have 2 years’ existing data  Several study topics are shown in the following slides

Ancillary Services Studies  Question: is receipt of CARE Act-funded ancillary/support services associated with clients’ entry into and retention in primary care?  These services account for about 1/3 of Title I, II discretionary spending – We track this on the basis of annual allocation data submitted with grant applications – Now submitted in standard spreadsheet format  Eight sites participated, seven with cross- sectional clinical data and one with time-series client interviews

Study Findings  Most sites found associations between ancillary service receipt and primary care entry, retention – Case management, mental health and substance abuse treatment, transportation, housing and nutrition assistance, etc.  Causal inferences difficult – Time-series data found lagged effects  August 2002 supplement to AIDS Care  Led to conceptual development on characteristics of systems of care

Impact of Services on Outcomes  Most studies have focused on – Access to care – Reductions in morbidity, mortality among CARE Act clients  Findings – Earlier studies showed lesser HAART access by uninsured clients – Later studies show comparable access, outcomes for CARE Act & insured clients – But they reveal other persistent disparities

Quality Initiative  ‘Haves’ were funded, ‘have-nots’ were not  Change in focus toward evaluation TA – New emphasis in 2000 reauthorization of CARE Act on CQI – Grantees asked to propose evaluations leading to CQI  Topics being examined – are patients receiving appropriate HAART, prophylactic meds, immunizations, and lab tests? – are there disparities among population subgroups in receipt of these services? – are patients being adherent with their medication regimens? – has receipt of these services reduced disease progression, as measured by CD4, VL?

HIV Research Network  To track HIV patients’ resource use on a ‘real time’ basis – Funded by HRSA, AHRQ, SAMHSA, NIH – 18 sites, about 15,000 patients – Submit standard data elements every 6 mo. – 1999 pilot study findings published in JAIDS, 6/2002, similar to HCSUS  Data are primarily from medical records

HIVRN Interviews  From clinical data cannot track services clients receive elsewhere  An interview is being conducted with a subset of clients at nearly all sites, asking about – primary care services that clients may have sought from other institutions – support services, such as case management and mental health treatment, including those not provided onsite – medications that clients are taking some sites do not have good records on medications others indicate only prescriptions that were written but do not track which prescriptions were filled.  Integrated data systems could answer this need

Growing Focus on Disparities  Outcome studies reveal disparities in access – associated with race/ethnicity, gender, risk factor, age, and insurance status  Planning studies to address disparities – Open to sites able to document them – Goals are to improve Providers’ skills for client-centered care Clients’ sense of empowerment to become more active participants in their care plans

CARE System Assessment  Just launched demonstration project – Using RARE techniques to identify barriers to care among marginalized populations – Assessment of systems of care to see how their organization contributes to barriers – Intent to transform planning process  One component of system integration is the integration of computerized data sets – CDP allowed us to compare service seeking patterns in different racial/ethnic groups