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

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

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                                                              

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                                                              

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.

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

Historical Case Finding Methods 1980-1997- 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 1998-2002- 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

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.

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

Physician On-Line Staging

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

Cancer Staging Policy July 2002

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

Cancer Staging Demonstration Physician Staging Auditing

Staging Completeness By Department 2002 and 2003

E-Cancer Registry

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

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

Data Collection All invasive tumours except skin (C44) in 8000-8110 histology range All in-situ tumours except CIN, PIN, VIN,VAIN All tumours of uncertain malignant potential

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

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

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

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

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%)

PMH E-Cancer Registry

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

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

Data Use

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

Cancer Registry Web-Site

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

Data Requests-2005 to Date

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

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

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.

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.

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

Team Cancer Registry!!