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Kaiser Permanente Northern California’s HIV Registry

HIVI. HIV Initiative of Kaiser Permanente and Care Management Institute. Kaiser Permanente Northern California’s HIV Registry. Leo Hurley, MPH Programmer/Analyst Kaiser Permanente Northern California Division of Research Berkeley, CA. Today’s Talk. Why the KPNC HIV Registry was developed?

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Kaiser Permanente Northern California’s HIV Registry

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  1. HIVI HIV Initiative of Kaiser Permanente and Care Management Institute Kaiser Permanente Northern California’sHIV Registry Leo Hurley, MPH Programmer/Analyst Kaiser Permanente Northern California Division of Research Berkeley, CA

  2. Today’s Talk • Why the KPNC HIV Registry was developed? • How it was built? • How it is maintained? • How it has been used? • Lessons learned

  3. Go back…for a moment…to 1988…. • KPNC was experiencing almost exponential growth in the number and rate of new cases of HIV infection……not enough information…

  4. NAMES Project AIDS Memorial Quilthttp://www.aidsquilt.org/history.htm …and too much death and dying

  5. Why the KPNC HIV Registry was developed? • Operational needs – primary reason • desperate need to anticipate / allocate resources • Clinical Support • lack of facility-level data capability • Research • unique opportunity: patients + data + desire

  6. How the KPNC Registry is built • Scan administrative data systems to identify probable cases of HIV: • HIV antibody test (not always done) • CD4 / CD8 ratio < 1.0 • detectable HIV viral load • HIV medications (ARVs) • encounter diagnosis (better with HC) • Chart review to confirm / rule out HIV • also capture non-admin data: behavior, demogs, pre-KP events

  7. Registry is handful of core data elements with core linkages to other systems as need • Hospital About 20 key variables including Outpatient Visits Pharmacy MRN (patient identifier) DOB Gender Race HIV risk group Date of initial HIV dx Date of AIDS dx Date of death Chart confirmed HIV (Y/N) Radiology Laboratory Membership Claims/Referrals Panel Provider ER Mortality Immunizations Demographics

  8. What it takes to maintain the Registry • Sweep admin systems for new cases (KPNC monthly) • Modify to look for new drugs, watch for coding errors • Conduct chart reviews (with QC) on an ongoing basis • Attach data from chart reviews, exclude non-cases • Refresh core variables for new / old cases • Membership • Mortality • Disease staging • Primary Care Panel • Monitor for consistency / integrity of data

  9. How the Registry is used • Operations support • Resource planning and allocation • “Where is this thing going…” • how big the pie needs to be • who gets what slice • Regulatory compliance • reporting HIV cases to State DHS • support Ryan White applications • requests for studies of unmet need (Medical Monitoring Project) • Medi-Cal reimbursement • qualifying AIDS cases • Correcting administrative data systems • e.g., outpatient diagnoses / significant health problem (OSCR)

  10. How the Registry is used (2) • Clinical support (and reporting on progress) • What used to be hard copy patient lists to facilitate case management… • e.g., patients with low CD4 or detectable viral load • Have now evolved into iHIV… • A web based tool

  11. KPNC HIV Registry Web Interface Cover Page

  12. How the Registry is used (3) • Quality initiatives - monitoring standard of care • prenatal testing for HIV • testing STD positives for HIV • early detection vs. late diagnoses • linkage to care and retention in care • recentness of CD4 and viral load monitoring • use of, and adherence to ART, undetectability • HAV, HBV, HCV testing and immunizations • HEDIS measures for HIV are coming!

  13. How the Registry is used (4) • Research • Clinical trials • feasibility – how many pts do we have, ID eligible participants • Epidemiology • Demographic trends, CHD in HIV, HIV and bone, cancer • Health Services Research • HIV testing in CDRP, role of HIV pharmacist, models of care • Outcomes • surgery, SSRI use and adherence to anti-retrovirals • Pharma post-marketing • longer term use of Atazanavir vs. trial data, Raltegravir safety • Genetics • Viral: evolution of resistance, effect of non-adherence • Host: slow progressors, drug side effects (e.g., lipids, hypersensitivity)

  14. World AIDS conference: Geneva 1998 Durban 2000 Barcelona 2002 Thailand 2004 Vienna 2010 Retrovirus Annual Mtg (CROI) Every year 1999-2011 ICAAC Annual Mtgs IDSA Annual Mtgs International Obs. Cohorts Workshop: Spain 2000 Switzerland 2004 Hungary 2005 United Nations Summit 2001 Munich Conf on Lipids in HIV - 2003 Forum for Collaborative HIV Research Workshops: Toxicities 2002 CHD 2003 Databases 2004 Where KPNC HIV data have been presented

  15. Lessons Learned • Key features of Registry design • resources / funding • availability of data…now we have Health Connect • need for highest possible specificity / sensitivity • timeliness of updates • brings researchers and clinicians together • no registry is perfect, ongoing refinement • much more than just the push of a button

  16. Lessons Learned (2) • Benefits can be unexpected • Alliances with other KP departments • Alliances with other researchers in / out of KP • Community / members see disease being managed smartly • After initial concerns…Why wouldn’t we have an HIV registry? • Allows for quick response to changes in the field • new treatments, new outcomes, demographic trends • Research is unlimited, esp. in a setting like KP • Admin data systems, available controls • Raises awareness of research among broader KP community

  17. Having an HIV Registry gave us the ability to track where things were going…. • KPNC was experiencing almost exponential growth in the number and rate of new cases of HIV infection……not enough information…

  18. …and when incidence took a sharp turn downward, we had the ability to know it

  19. Closing remarks • An HIV Registry can be as simple or complex as you want it to be KP data systems make a high quality registry possible in all regions • A disease registry (for HIV, HBV/HCV orr any disease) is a powerful tool that enables: • Resource planning and allocation • Epidemiologic monitoring • Clinical support / population management • Quality reporting • Research

  20. Division of Research Admin Joe Selby, MD, Director Reserarch Investigators, DOR Gerald DeLorenze, PhD Micahel Horberg, MD, MAS (now with KPMA) Charles Quesenberry, PhD Michael Silverberg, PhD KPNC Regional Admin Michael Allerton,, MS, Regional Medical Group KPNC Clinicians Michael Horberg, MD, Medicine, Santa Clara (formerly) Dan Klein, MD, Infectious Disease, Hayward Sally Slome, MD, Infectious Disease, Oakland Programmer/Analysts, DOR Leo Hurley, MPH Wendy Leyden, MPH I-Szu Yang, BA Medical Records Analyst, DOR Sue Reinheimer, MRA Administrative Support Amanda Charbonneau, BA Courtney Ellis, BA KPNC HIV Registry Team

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