Download Why the KPNC HIV Registry was developed?

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?
How it was built?
How it is maintained?
How it has been used?
Lessons learned
KPNC HIV Registry
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…
0
KPNC HIV Registry
300
331
296
226
268
322
379
370
405
404
493
1220
1027
747
578
200
1048
400
849
600
566
800
405
1000
258
1200
178
1400
114
1600
35
1800
Rate
65
56.4
60
Number of 'Incident' Cases
51.6
55
Incidence Rate / 100K
45.3
43.9
50
45
40
32.6
30.0
35
25.2
30
21.9
20.7
25
17.0 16.9
14.9
14.4
14.6
20
11.8
11.0
10.3
10.1
9.9 15
9.6
6.8
8.0
10
2.2
1.3
5
0
80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03
21
Cases
2000
Figure 2. Incident cases of HIV (diagnosed among members) and
incidence rate (per 100,000 members)
…and too much death and dying
NAMES Project AIDS Memorial Quilt
http://www.aidsquilt.org/history.htm
KPNC HIV Registry
Why the KPNC HIV Registry was developed?
Operational needs – primary reason

desperate need to anticipate / allocate resources
Clinical Support
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lack of facility-level data capability
Research
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unique opportunity: patients + data + desire
KPNC HIV Registry
How the KPNC Registry is built
Scan administrative data systems to identify probable
cases of HIV:
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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
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also capture non-admin data: behavior, demogs, pre-KP events
KPNC HIV Registry
Registry is handful of core data elements
with core linkages to other systems as need
Outpatient Visits
Hospital
Laboratory
Claims/Referrals
ER
About 20 key
variables including
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)
Immunizations
KPNC HIV Registry
Demographics
Pharmacy
Radiology
Membership
Panel Provider
Mortality
What it takes to maintain the Registry
Sweep admin systems for new cases (KPNC monthly)
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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
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Membership
Mortality
Disease staging
Primary Care Panel
Monitor for consistency / integrity of data
KPNC HIV Registry
How the Registry is used
Operations support
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Resource planning and allocation
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Regulatory compliance
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reporting HIV cases to State DHS
support Ryan White applications
requests for studies of unmet need (Medical Monitoring Project)
Medi-Cal reimbursement

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“Where is this thing going…”
how big the pie needs to be
who gets what slice
qualifying AIDS cases
Correcting administrative data systems

e.g., outpatient diagnoses / significant health problem (OSCR)
KPNC HIV Registry
How the Registry is used (2)
Clinical support (and reporting on progress)

What used to be hard copy patient lists to facilitate
case management…
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e.g., patients with low CD4 or detectable viral load
Have now evolved into iHIV…
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A web based tool
KPNC HIV Registry
KPNC HIV Registry Web Interface Cover Page
KPNC HIV Registry
How the Registry is used (3)
Quality initiatives - monitoring standard of care
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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!
KPNC HIV Registry
How the Registry is used (4)
Research
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Clinical trials
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Epidemiology
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surgery, SSRI use and adherence to anti-retrovirals
Pharma post-marketing
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HIV testing in CDRP, role of HIV pharmacist, models of care
Outcomes

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Demographic trends, CHD in HIV, HIV and bone, cancer
Health Services Research
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feasibility – how many pts do we have, ID eligible participants
longer term use of Atazanavir vs. trial data, Raltegravir safety
Genetics
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Viral: evolution of resistance, effect of non-adherence
Host: slow progressors, drug side effects (e.g., lipids, hypersensitivity)
KPNC HIV Registry
Where KPNC HIV data have been presented
World AIDS conference:
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Geneva 1998
Durban 2000
Barcelona 2002
Thailand 2004
Vienna 2010
International Obs. Cohorts Workshop:
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Spain 2000
Switzerland 2004
Hungary 2005
United Nations Summit 2001
Munich Conf on Lipids in HIV - 2003
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Retrovirus Annual Mtg (CROI) Forum for Collaborative HIV Research
Workshops:
 Every year 1999-2011
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ICAAC Annual Mtgs
IDSA Annual Mtgs
KPNC HIV Registry
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Toxicities 2002
CHD 2003
Databases 2004
Lessons Learned
Key features of Registry design
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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
KPNC HIV Registry
Lessons Learned (2)
Benefits can be unexpected
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Alliances with other KP departments
Alliances with other researchers in / out of KP
Community / members see disease being managed smartly
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Allows for quick response to changes in the field
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new treatments, new outcomes, demographic trends
Research is unlimited, esp. in a setting like KP

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After initial concerns…Why wouldn’t we have an HIV registry?
Admin data systems, available controls
Raises awareness of research among broader KP community
KPNC HIV Registry
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…
0
KPNC HIV Registry
300
331
296
226
268
322
379
370
405
404
493
1220
1027
747
578
200
1048
400
849
600
566
800
405
1000
258
1200
178
1400
114
1600
35
1800
Rate
65
56.4
60
Number of 'Incident' Cases
51.6
55
Incidence Rate / 100K
45.3
43.9
50
45
40
32.6
30.0
35
25.2
30
21.9
20.7
25
17.0 16.9
14.9
14.4
14.6
20
11.8
11.0
10.3
10.1
9.9 15
9.6
6.8
8.0
10
2.2
1.3
5
0
80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03
21
Cases
2000
Figure 2. Incident cases of HIV (diagnosed among members) and
incidence rate (per 100,000 members)
…and when incidence took a sharp turn
downward, we had the ability to know it
KPNC HIV Registry
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:
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Resource planning and allocation
Epidemiologic monitoring
Clinical support / population management
Quality reporting
Research
KPNC HIV Registry
KPNC HIV Registry Team
Division of Research Admin
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Joe Selby, MD, Director
Reserarch Investigators, DOR
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Gerald DeLorenze, PhD
Micahel Horberg, MD, MAS (now with KPMA)
Charles Quesenberry, PhD
Michael Silverberg, PhD
KPNC Regional Admin
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Michael Allerton,, MS, Regional Medical Group
KPNC Clinicians
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Michael Horberg, MD, Medicine, Santa Clara
(formerly)
Dan Klein, MD, Infectious Disease, Hayward
Sally Slome, MD, Infectious Disease, Oakland
KPNC HIV Registry
Programmer/Analysts, DOR
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Leo Hurley, MPH
Wendy Leyden, MPH
I-Szu Yang, BA
Medical Records Analyst, DOR
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Sue Reinheimer, MRA
Administrative Support


Amanda Charbonneau, BA
Courtney Ellis, BA