April 7 - 11, San Francisco AMIA 2014 Joint Summits on Translational Science

1. City of Hope Research Informatics
Common Data Elements
Information Architecture Framework
AbdulMalik Shakir, Kelli Olsen MS, Adina Londrc MPH,
Susan Pannoni, Stacy Berger, Joyce C. Niland PhD,
City of Hope, Duarte, CA
April 2014

2. Disclosure
• Mr. Shakir discloses that as of Q1 2014 he is no longer
an employee of City of Hope.
• Mr. Shakir is co-founder and partner of Hi3 Solutions,
a privately owned Health Information Consulting and
Technology vendor headquartered in Los Angeles, CA.
• Mr. Shakir is actively involved in informatics projects
with the American College of Surgeons and the
American College of Cardiology.

3. Learning Objective
After participating in this activity the learner should be
better able to:
• Understand enterprise data management issues and
challenges and the role of meta-data management in
addressing them.
• Identify relevant informatics standards and frameworks
useful for use in harmonizing the semantics of enterprise
data elements.
• Be familiar with similar data harmonization initiatives with
work products that can be leverage for internal use.

4. Research Informatics Common Data
Elements (RI-CDE)
• RI-CDE is a repository of data elements, their business and
technical metadata, and their semantic relationships.
• RI-CDE enables a methodology by which the semantics of
common data elements are harmonized throughout the
enterprise, yielding a uniform nomenclature for shared
concepts and traceability to their realization in information
systems, databases, and application interfaces.
• The RI-CDE serves as the foundation for enabling decision
support and semantic interoperability.

5. Research Informatics Enterprise
Architecture Framework (RI-EAF)
• RI-EAF is an architectural framework for information
management developed by the City of Hope (COH)
Department of Information Science (DIS) in 2010.
• The purpose of RI-EAF is to facilitate the planning,
procurement, engineering, and deployment of information
systems needed to support research activities at COH.
• RI-EAF is based, in part, upon The Open Group Architecture
Framework (TOGAF); the Health Level Seven (HL7) Services
Aware Interoperability Framework (SAIF); the HL7 Common
Terminology Services Release 2 (CTS II); and the ISO 11179-3
Metadata Registry Meta-model.

6. What is a Framework?
• In general, a framework is a real or conceptual structure
intended to serve as a support or guide for the building of
something that expands the structure into something useful.
– In computer systems, a framework is often a layered structure
indicating what kind of programs can or should be built and how they
would interrelate.
– Some computer system frameworks also include actual programs,
specify programming interfaces, or offer programming tools for using
the frameworks.
– A framework may be for a set of functions within a system and how
they interrelate; the layers of an operating system; the layers of an
application subsystem; how communication should be standardized at
some level of a network; and so forth.

7. RI-EAF Information Architecture
Application
View Point
EnterpriseInformation
View Point
Information Concept
(from Information Architecture)
Code System
(from Information Architecture)
Actor
(Organization, Person, Location)
Motivation
(Mission, Objective, Measure)
Activity
(Function, Process, Project)
Information System
(from Application Architecture)
Business Architecture
Technology
View Point
ApplicationEnterprise
View Point
Actor
(from Business Architecture)
Activity
(from Business Architecture)
Information System
(Application, Service, Module)
System Relationship
(Data Exchange,
Component / Service,
Successor)
Data Access
(CRUD, Send, Receive)
Hardware Device
(from Technical Architecture)
Data Structure
(from Information Architecture)
Application Architecture
Technology
View Point
InformationEnterprise
View Point
Actor
(from Business Architecture)
Motivation
(from Business Architecture)
Information Concept
(Conceptual Domain, Concept,
Semantic Relationship)
Data Structure
(Database, Interface,
Data Item)
Code System
(Value Concept, Coded Term,
Value Set)
Hardware Device
(from Technical Architecture)
Information System
(from Application Architecture)
Information Architecture
Application
View Point
TechnologyInformation
View Point
Data Structure
(from Information Architecture)
Hardware Device
(Server, User Interface,
Storage Device)
System Software
(Operating System,
Network Software,
Communication Protocol)
Software Tool
(Programming Language,
Database Management System,
Application Development
Environment)
Information System
(from Application Architecture)
Technical Architecture
Technology
View Point
InformationEnterprise
View Point
Actor
(from Business Architecture)
Motivation
(from Business Architecture)
Information Concept
(Conceptual Domain, Concept,
Semantic Relationship)
Data Structure
(Database, Interface,
Data Item)
Code System
(Value Concept, Coded Term,
Value Set)
Hardware Device
(from Technical Architecture)
Information System
(from Application Architecture)
Information Architecture

8. RI-CDE Information Model

9. Diagnosis Use Case

10. Diagnosis Use Case
• What activities create or consume diagnosis data?
• What business actors participate in activities that
involve the use of diagnosis data?
• What workflows include activities that involve the use
of diagnosis data?
• What information systems enable workflows that
involve the use of diagnosis data?
• What data structures used by information systems
include data elements that implement diagnosis
information?
• What code system terms are used to encode diagnosis
data in data structure data elements?

11. Diagnosis Related Workflows
New Patient Services (NPS)
conducts preliminary review and
patient is screened via existing
workflow processes.
Patient Presents to COH:
Preliminary ‘diagnosis’ (disease
site) is captured in CIS NEW
PATIENT SERVICES PROFILE
(formerly in SRM Face Sheet)
Patient is seen by COH
Physician. IF patient has a
surgical procedure then synoptic
data is available and in the
COPATH system
Review Billing Data in Data
Warehouse (DW) as a Validation
Cross-Check
Utilize ‘diagnosis complaint / admit
reason’ field within SRM Face
Sheet Module of CIS
Actors:
• Blue = New Patient Services (NPS)
• Orange = Dept of Information Sciences (DIS)
• Green = Dept of Pathology
• Red = Finance Dept
Workflows and Activities:
• New Patient Screening
• Patient Registration
• Diagnostic Procedures and Test
• Treatment Procedures and Outcomes
• Patient Services Billing
Information Systems and Data Stores
• New Patient Services
• Allscripts EMR
• CoPath Pathology System
• Enterprise Data Warehouse

12. Free Text
Example of SRM Face Sheet

13. MEDRECNO 155547
Example of New Patient Services (NPS) Profile and Patient Issues Table of
EDW (Based on ICD-9 Codes)
Free Text

14. Additional Use Case: Utilizing Cancer Registry Data to Collect National
Quality Foundation (NQF) Metrics
 Current Measures
 Breast Cancer
 Chemo considered / administered within 4 months of dx
for women < 70 yrs Stage II / III HR (-) breast cancer
 Tamoxifen considered / administered within 1 year of dx
for women with Stage II / III HR (+) breast cancer
 Colon Cancer
 Adjuvant chemo considered / administered within 4 months
of dx for patients < 80 yrs with Stage III (lymph node +) colon cancer
 Future Measures
 Prostate Cancer
 Avoidance of overuse bone scans for staging low-risk patients
 Adjuvant hormonal therapy for high-risk patients

15. Current State Analysis Observations
• Undocumented inter-departmental data dependencies
• Duplicate data entry and redundant data stores
• Proliferation of terminology homonyms, synonyms, and
conflation
• A mixture of discrete structured data, unstructured text, and
scan image data
• Inconsistent encoding of structured data
• Timeliness of structured data encoding is driven by financial
interest and not clinical or research needs
• Semantically consistent data analysis and performance
measurement is complex, time consuming, and error prone

16. Proposed Diagnosis Workflow
New Patient Services (NPS)
conducts preliminary review and
patient is screened via existing
workflow processes.
Patient Presents to COH:
Preliminary ‘diagnosis’ (disease
site) is captured in CIS NEW
PATIENT SERVICES PROFILE
(formerly in SRM Face Sheet)
DIS verified that backend data access to the CIS
NEW PATIENT SERVICES PROFILE (Registration
Screen) is available through EDW (to identify breast
& colorectal patients initially, for quality metrics)
Patient is seen by COH
Physician. IF patient has a
surgical procedure then synoptic
data is available and in the
COPATH system
Reviewing COPATH Outside Slides/Outside
Consults to identify Breast & Colorectal Pts.
Review Billing Data in Data
Warehouse (DW) as a Validation
Cross-Check
Utilize ‘diagnosis complaint / admit
reason’ field within SRM Face
Sheet Module of CIS
DIS newly developed ‘Patient List Analytic
Report’ utilizing the ‘diagnosis complaint /
admit reason’ field merged with COPATH
Synoptic data to identify new Breast &
Colorectal patients with a surgical
procedure completed at COH
Legend:
Blue = New Patient Services (NPS)
Orange = Dept of Information Sciences (DIS)
Green = Dept of Pathology Solid Line = Current Process
Red = Finance Dept Dotted Line = Newly Proposed Process

17. Additional Resources
• TOGAF: http://www.opengroup.org/togaf/
• HL7 SAIF: http://wiki.hl7.org/index.php?title=Product_SAIF
• HL7 CTS II: http://wiki.hl7.org/index.php?title=Common_Terminology_Services_-
_Release_2_(Normative)
• ISO 11179-3:
http://www.cc.gatech.edu/projects/curator/oldsite/docs/ISO_IEC_11179-3.pdf
• NCI EVS: http://evs.nci.nih.gov/
• NCI caDSR: https://wiki.nci.nih.gov/display/caDSR/caDSR+Wiki
• BRIDG Domain Analysis Model: http://www.cdisc.org/bridg
• NLM UMLS: http://www.nlm.nih.gov/research/umls/
• NCI Meta-thesaurus: http://ncim.nci.nih.gov/ncimbrowser/

18. Thank You
Abdul-Malik Shakir
Director, Research Informatics
Information Architecture
City of Hope
1500 East Duarte Road
Duarte, CA 91010-3000
Office: (626) 256-4673 Mobile: (626) 644-4491
Email: ashakir@coh.org
AbdulMalik Shakir
President and Chief Informatics
Scientist
Hi3 Solutions
3500 West Olive Ave, Suite # 300,
Burbank, CA 91505
Skype: +1 909.833.4661  Mobile: (626) 644-4491
Email: abdulmalik.shakir@hi3Solutions.com

19. Closing Thought