Kaiser Permanente Northern California’sHIV RegistryLeo Hurley, MPHProgrammer/AnalystKaiser Permanente Northern CaliforniaDivision of ResearchBerkeley, CA

HIVIHIV Initiative of Kaiser Permanente and Care Management Institute

KPNC HIV Registry

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….

Figure 2. Incident cases of HIV (diagnosed among members) and incidence rate (per 100,000 members)

21 35 114

178

258 40

5 566 84

9 1048 12

20

1027

747

578

493

404

405

370

379

322

268

226

296

331

300

1.3 2.26.8

10.314.4

21.9

30.0

43.9

51.656.4

45.3

32.6

25.220.7

17.0 16.9 14.9 14.611.8

9.6 10.1 11.0 9.98.0

0

200

400

600

800

1000

1200

1400

1600

1800

2000

80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03

05

1015

2025

3035

4045

5055

6065

Number of 'Incident' Cases

Incidence Rate / 100K

Cases Rate

KPNC was experiencing almost exponential growth in the number and rate of new cases of HIV infection……not enough information…

KPNC HIV Registry

…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 lack of facility-level data capability

Research unique opportunity: patients + data + desire

KPNC HIV Registry

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

KPNC HIV Registry

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

Hospital

Laboratory

Claims/Referrals

ER

Outpatient Visits

Immunizations

About 20 key variables including

MRN (patient identifier)DOB

GenderRace

HIV risk groupDate of initial HIV dx

Date of AIDS dxDate of death

Chart confirmed HIV (Y/N)

Pharmacy

Demographics

Radiology

Panel Provider

Membership

Mortality

KPNC HIV Registry

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 basisAttach data from chart reviews, exclude non-casesRefresh core variables for new / old cases

Membership Mortality Disease staging Primary Care Panel

Monitor for consistency / integrity of data

KPNC HIV Registry

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)

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… e.g., patients with low CD4 or detectable viral load

Have now evolved into iHIV… 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 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 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)

KPNC HIV Registry

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 2001Munich Conf on Lipids in HIV - 2003Forum for Collaborative HIV Research Workshops:

Toxicities 2002 CHD 2003 Databases 2004

KPNC HIV Registry

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

KPNC HIV Registry

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

KPNC HIV Registry

Figure 2. Incident cases of HIV (diagnosed among members) and incidence rate (per 100,000 members)

21 35 114

178

258 40

5 566 84

9 1048 12

20

1027

747

578

493

404

405

370

379

322

268

226

296

331

300

1.3 2.26.8

10.314.4

21.9

30.0

43.9

51.656.4

45.3

32.6

25.220.7

17.0 16.9 14.9 14.611.8

9.6 10.1 11.0 9.98.0

0

200

400

600

800

1000

1200

1400

1600

1800

2000

80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03

05

1015

2025

3035

4045

5055

6065

Number of 'Incident' Cases

Incidence Rate / 100K

Cases Rate

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…

KPNC HIV Registry

…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:

Resource planning and allocation Epidemiologic monitoring Clinical support / population management Quality reporting Research

KPNC HIV Registry

KPNC HIV Registry Team

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