1. The Development of an E-Cancer Registry
Darlene Dale
Head, PMH Cancer Registry
Michigan Cancer Registrars Association 2005 Annual Educational Conference
October 14th, 2005

2. Outline Overview of Princess Margaret Hospital (PMH), Toronto, Canada
History of the PMH Cancer Registry
Physician On-Line Staging
Demonstration of Staging & Audit Process
Enterprise Data Warehouse integration into the Cancer Registry
Data Access & Use

3. Princess Margaret Hospital
Princess Margaret Hospital opened in 1958 in Toronto, Canada
Cancer Registry data collection from the beginning
Now a Comprehensive Cancer Centre Treatment Facility
As of November 1998, PMH became part of the University Health Network along with 2 Acute Care Facilities
All Oncology Services moved to PMH
Treat over 10,000 new cases
per year seen at PMH
                                                             

4. Princess Margaret Hospital-At a Glance
130 In-Patient Beds
162,000 Ambulatory Clinic Visits
25,000 Chemotherapy Visits per year
9,500 Radiation course per year
250 Bone Marrow Transplant per year
Research-Ontario Cancer Institute
                                                             

5. PMH Cancer Registry
Hospital-based Cancer Registry, that provides a database for the gathering and dissemination of diagnosis, staging, treatment, and follow-up information for cancer patients seen at PMH.
Data Collection standards: Use the Registry, Operations and Data Standards (ROADS) from the Commission on Cancer beginning with the 1998 data.

6. PMH Cancer Registry Staff
9 CTRs
Most have diploma/degree in Health Information Management
Certification with CHIMA (The Canadian Health Information Management Association)
1 Cancer Registry Analyst
1 Information Management Analyst
1 Administrative Assistant
2 Registry Clerks
Head of the Registry

7. Historical Case Finding Methods
Manual process, review of in-patient and out-patient lists and list of new chart numbers assigned
Charts were pulled for abstracting
Manual process was used to identify second primaries
Demographics from scheduling lists downloaded into Cancer Registry software
List of all appointments not just new patients, including non-neoplastics
Monthly lists were reviewed to determine cases to process

8. History of Staging at PMH
The collection of staging information began when PMH was opened in 1958.
Initially captured TNM Staging for Breast, Ovary, Head & Neck
Completed by Physicians and Registry staff
Additional sites were added.

9. History of Staging at PMH- (cont’d)
In the late 1990’s MD participation in staging began to decline.
In 2001, Cancer Registry Committee, Staging
& Education Sub-Committee and VP/COO approved Physician staging for all stageable sites using UICC-TNM.
Purpose: To obtain cancer classification and staging data in an accessible format for integration into the cancer registry so that it can be used for research in an acceptable timeframe

10. Physician On-Line Staging

11. Development of Physician On-Line Staging Application
A committee was established with the task of developing an on-line staging tool for physicians to enter all the UICC-TNM information on-line through a web-based tool that would be accessible by Cancer Registrars and integrated into the Cancer Registry database
An auditing process was required to track completeness

12. Cancer Staging Policy July 2002

13. Physician On-Line Staging Application-Audit Process
Physicians given 3 months from the time of the first appointment date to complete the staging
After the 4th month if the staging is still not complete, the names of the physicians with incomplete cases are sent to the Department Head
After the 5th month, if the staging is still not complete, the names of the physicians with incomplete cases are sent to the VP /COO

14. Cancer Staging Demonstration
Physician Staging
Auditing

15. Staging Completeness By Department 2002 and 2003

16. E-Cancer Registry

17. Current Case Finding Methods-Physician On-Line Staging Application
Since July 2002, physicians required to classify and stage all new patients to PMH
Cases for Physicians to stage automatically downloaded from patient scheduling system
New Ambulatory Patients
Surgical Patients
In-Patients

18. Enterprise Data Warehouse (EDW)
EDW integrates information from various transactional systems within the UHN in order to provide a single environment that facilitates analysis for both the corporate and research communities.
Not just oncology cases, institution wide
Currently houses data from over 14 transactional systems including:
cancer staging, patient demographics, visits, pharmacy, radiation therapy, surgery

20. Data Collection
All invasive tumours except skin (C44) in histology range
All in-situ tumours except CIN, PIN, VIN,VAIN
All tumours of uncertain malignant potential

21. Data Elements Collected
Patient identification
Cancer identification
Stage of disease
at diagnosis
at relapse/progression
Treatment
Recurrence
Follow-up

22. Patient Identification
Medical Record Number
First, middle name, and surname
Date of birth
Sex
Ontario Health number
Residence
current
at diagnosis

23. Cancer Identification
Date of diagnosis
Primary site of cancer
Histology and behaviour
Laterality
Diagnostic confirmation
PMH registration date
Institution referred to/from

24. Data Sources in EDW Integrated into the Cancer Registry
Cancer Staging
Patient Scheduling
Clinical Desktop-Electronic Chart
Radiation Therapy
Pharmacy
Chemotherapy
Hormones
Future
Surgery
Chemotherapy & Hormones from order/administer system
Synoptic Pathology
Radiology

25. Data Elements Transferred from EDW to Cancer Registry Software
Total Number
Available in Data Warehouse
Abstract 10 8
Patient ID 19 11
Tumour/Extent of Disease 27 12
Treatment-Surgery 4
Treatment-Radiation 6 3
Treatment-Chemotherapy 9 5
Hormone 2
Biological
Admission/Follow-Up 7
Totals 97
48 (49.5%)

26. PMH E-Cancer Registry

30. Advantages of E-Registry
The demographics are downloaded. These are tedious to enter: name, full address, date of birth
First contact date gives a hint as to where to start in reviewing the electronic chart which is UHN wide, not oncology specific
Identifies treatment given at UHN
Can specify what types of cases to download
Malignant, in-situ, benign, non-neoplastic
Physician selects generic primary site
Can pull out certain cases if required
Staff cannot think of any disadvantages

31. Next Steps Audit to compare Physician staging with Registrar staging
Assess time required to abstract between old and new methods
Look at feasibility of Collaborative Stage

32. Data Use

33. Uses of Cancer Registries-Outcomes
Measuring the impact of the delivery of care is critical
Stage specific survival is an outcome measure
Stage at initial diagnosis is used as an indicator for cancer control programmes
Recurrence rates
Disease-free intervals

34. Cancer Registry Web-Site

35. Data Access
Access to data requires approval of the Research Ethics Board (REB)
Request submitted to the Cancer Registry & Data Access Committee
Requires all Department Head signatures
Participation on the study of relevant Departments
Approval of Cancer Site Group leader
If approved submitted to REB

36. Data Requests-2005 to Date

37. Site Specific Databases
Lymphoma
Leukemia
Central Nervous System
Discontinued for 2004
Seminoma
Thoracic

40. Data Submissions-Provincial
PMH Cancer Registry data is submitted to Cancer Care Ontario
CCO operates the Ontario Cancer Registry
The Ontario Cancer Registry is a computerized database of information on all Ontario residents who have been newly diagnosed with cancer All new cases of cancer are registered, except non-melanoma skin cancer. More than 1.3 million cases have been registered since 1964

41. Data Submissions-Federal
Each Province and Territory has a Cancer Registry
Each P/T submits their data to Statistics Canada, located in Ottawa
Data is used by the Public Health Agency of Canada as well as other researchers.

43. Conclusions
The Physician- on-line Cancer Staging application drives the registry’s case finding process
The development of the E-Registry tool and incorporation into the EDW has enabled data to be rapidly accessed, which greatly facilitates outcome analysis for both administrative and research purposes.

44. The Cancer Registry is like an iceberg… The tip of the iceberg is what is visible to all people, but the largest
portion of the iceberg remains under the water and unseen by most. Underneath the iceberg is a vast community of healthcare professionals, national standards, and system realities that drive
the registrar towards the collection and management of quality data.
D. Getreuer CTR

45. Team Cancer Registry!!