Kaiser Permanente Northern California

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Kaiser Permanente Northern CaliforniasHIV
Registry
HIVI
HIV Initiative of Kaiser Permanente and Care
Management Institute

• Leo Hurley, MPH
• Programmer/Analyst
• Kaiser Permanente Northern California
• Division of Research
• Berkeley, CA

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Todays Talk

• Why the KPNC HIV Registry was developed?
• How it was built?
• How it is maintained?
• How it has been used?
• Lessons learned

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Go backfor a momentto 1988.

• KPNC was experiencing almost exponential growth
  in the number and rate of new cases of HIV
  infectionnot enough information

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and too much death and dying

• NAMES Project AIDS Memorial Quilt
  http//www.aidsquilt.org/history.htm

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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

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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 lt 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

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Registry is handful of core data elements with
core linkages to other systems as need
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)

• Hospital

Radiology
Laboratory
Membership
Claims/Referrals
Panel Provider
ER
Mortality
Immunizations
Demographics
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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

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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)

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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

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KPNC HIV Registry Web Interface Cover Page
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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!

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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)

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Where KPNC HIV data have been presented

• 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

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Lessons Learned

• Key features of Registry design
• resources / funding
• availability of datanow 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

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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 concernsWhy wouldnt 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

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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
  infectionnot enough information

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


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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

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KPNC HIV Registry Team

• 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

• 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