Download Informatics for Population-based Cancer Surveillance

Informatics Update
Eric B. Durbin, DrPH, MS
Assistant Professor, Division of Biomedical Informatics, College of Medicine
Director, Cancer Research Informatics Shared Resource Facility, Markey Cancer Center
Director of Cancer Informatics, Kentucky Cancer Registry
University of Kentucky
First Annual Kentucky-Indiana Regional Cancer Registrars’ Meeting
September 8, 2016
Topics to be Covered

History of the Kentucky Cancer Registry
- Informatics support

Towards Real Time Cancer Reporting
- Electronic pathology reporting
- State Health Information Exchange (HIE)

Towards Improved Data Dissemination
- Cancer-rates.info
Kentucky Cancer Registry

Established in 1990 at the University of Kentucky Markey Cancer Center

Kentucky Revised Statute 214.556
- Facilities that diagnose or treat cancer patients “shall report to the Kentucky
Cancer Registry, through the cancer patient data management system and in
a format prescribed by the KCR, each case of cancer seen at that health
facility…”

KCR became CDC/NPCR registry in 1994

KCR became NCI/SEER registry in 2000
Cancer Patient Data Management System
(CPDMS.net)

Web-based software application used by all non-federal hospitals in
Kentucky
- KCR provides software and technical support free of charge

Used to capture, integrate, manage and report all cancer incidence data
for Kentucky

Technologies
- MySQL database
- Java/Tomcat middle tier
- PHP and Javascript (ExtJS) front end

NEW: Integrating CPDMS.net with SEER*DMS over next year
CPDMS.net: A Unique Integrated Statewide
Reporting System
Towards Real Time Reporting

American College of Surgeons
- RQRS

Federal Agencies
- CDC
 Early Case Capture Initiative
- NCI/SEER
 Funding electronic data sources
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Cancer Research and Precision Medicine

Rapid case ascertainment for clinical trials and other studies
Delays in Cancer Surveillance Data

A limitation of U.S. cancer surveillance programs is the length of time
required to capture complete data
- Hospitals
- Physicians/clinics
- Pathology labs
- Death certificates
- Other state cancer registries

Cases for residents diagnosed in other states often suffer the longest
reporting delays
Reporting Delays in Kentucky 2004-2013
Cancer Reporting Delays
In State vs. Out of State
18
16
14
Proportion (%)
12
10
In State
8
OOS
6
4
2
0
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48
Reporting Delay (Months)
Targets for Early Case Capture

Physician Electronic Health Record (EHR) reporting
- Meaningful Use Stage 2

Electronic pathology (E-Path) reporting
- >90% of all cancers are histologically confirmed

State Health Information Exchanges (HIEs)
- Emerging potential
KCR E-Path History

NCI/SEER sponsored implementation of electronic pathology (E-Path)
reporting at SEER registries beginning in 2004
- Transmissions through Artificial Intelligence in Medicine (AIM), Inc.
- Transmed

CDC/NPCR sponsored implementation of national laboratory reporting
to registries beginning in 2009
- Transmissions through the Public Health Information Messaging System
(PHIN-MS)
E-Path Reporting in Kentucky
Cincinnati Children’s
 54 hospital and independent
labs reporting
• > 95% population coverage
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Military Installation
E-Path site in progress
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* Vanderbilt
* Regenstrief
Indiana HIE
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E-Path Reporting by Source
140000
120000
100000
Reports
80000
60000
40000
20000
0
2004
2005
2006
2007
2008
2009
2010
2011
Year
National Labs
Hospital Labs
2012
2013
2014
2015
2016
KCR E-Path Architecture
E-Path Portal for Hospital Casefinding
Linking E-Path Reports to Hospital Abstracts
E-Path for Rapid Case Ascertainment
Population-based samples from cancer patients with short survival times
Pathology
Laboratories
Registry
Operations
UK/UofL
Researchers
Histology
External
Collaborators
Sex
Age
KCR
Annotated E-Path
Reports
Sent in Real Time
NLP Pipeline
State Health Information Exchanges (HIEs)

Kentucky Health Information Exchange
- KCR actively engaged in physician EHR reporting for Meaningful Use

HealthBridge
- Limited capacity to identify and route electronic records to KCR

Indiana Health Information Exchange (IHIE)
- Largest/most mature in country
- Collaborating with IHIE for early case capture
- Regenstrief Institute developing technical infrastructures and informatics
methods
Kentucky IHIE Collaboration

Established legal authority through Indiana State Cancer Registry
- Kentucky and Indiana have a long standing data exchange agreement in
place
- Indiana HIE data governance board approved access by KCR

Implemented standards-based reporting mechanisms
- Pathology reports – HL7 2.5.x

North American Association of Central Cancer Registries

Volume V
- Clinical data – MU2 CDA
Review of CDA Reports for Known Cancer
Patients, 2000-2014 (N=216)

~3000 cancer patients known to be diagnosed and/or treated in
Indiana matched with IHIE patients

216 patients identified and CDA messages obtained for review

83/216 (38.4%) Showed evidence of cancer information

30/216 (13.9%) Contained sufficient information for a registry case
abstract

Missing information
- 27/216 (12.5%) populated cancer diagnosis section (25 abstracted)
- 112/216 (51.8%) failed to mention anything about a malignancy
Limitations

HIEs still lacking sufficient clinical information necessary for cancer
surveillance and early case capture
- Dependent upon hospital and provider EHRs
- EHR often lacks fundamental cancer information such as diagnosis date,
cancer site, histology, stage, treatment, biomarkers, and etc.

EHRs and HIEs need to evolve to better represent contextual health
information for each patient
- Disease centric view of specific diagnoses, diagnostic tests, lab results,
treatment procedures, treatment agents and disease specific outcomes

However, Indiana IHE has proven to be a reliable source for e-Path
reports
- Regenstrief developed NLP filter
Disseminating Registry Data:
Cancer-rates.info

An online data visualization and exploration service hosted by KCR

Provides free public access to population-based cancer incidence and
mortality data for central cancer registries
http://cancer-rates.info/ky
KCR’s cancer-rates.info Service

Offered as an annual contract to participating central cancer registries

Current participants include MA, NJ, GA, KY, MI, MS, AR, IA, WI, MN, TX, NM,
UT, CA, WA, HI, North American Association of Central Cancer Registries
(rates by State)

NCI in discussions to cover ALL SEER registries

Indiana State Cancer Registry
- KCR’s next client?
Questions/Discussion

Contact Information:
Eric B. Durbin, DrPH, MS
Telephone: 859-218-3182
E-mail: [email protected]
Web: http://www.kcr.uky.edu