Lets Talk Informatics Build ing a Prov incia l Ca ncer Registry Sy - - PowerPoint PPT Presentation

Let’s Talk Informatics

Build ing a Prov incia l Ca ncer Registry Sy stem Looking for Da ta in a ll the Right Pla ces!

Maureen MacIntyre, Director Quality & Cancer System Performance Kirsty McDougall, Senior IM/IT Project Manager Cancer Registries

Program of Care for Cancer

January 26, 2017 Bethune Ballroom, Halifax, Nova Scotia

Please be advised that we are currently in a controlled vendor environment for the One Person One Record project. Please refrain from questions or discussion related to the One Person One Record project.

Informatics…

Utilizes health information and health care technology to enable patients to receive best treatment and best outcome possible.

Clinical Informatics…

is the application of informatics and information technology to deliver health care. AMIA. (2017, January 13). Retrieved from https://www.amia.org/applications-infomatics/clinical- informatics

Conflict of Interest Declaration

• We do not have an affiliation (financial or
• therwise) with a pharmaceutical, medical

device, health care informatics

• rganization, or other for-profit funder of

this program.

Obj ectives

At the conclusion of this activity, participants will be able to…

▫ Identify what knowledge and skills health care providers will need to use information now and in the future. ▫ Prepare health care providers by introducing them to concepts and local experiences in Informatics. ▫ Acquire knowledge to remain current with new trends, terminology , studies, data and breaking news. ▫ Cooperate with a network of colleagues establishing connections and leaders that will provide assistance and advice for business issues, as well as for best-practice and knowledge sharing.

14 million cancers diagnosed world wide each year; 200,000 in Canada; 6200 for Nova Scotia 8.2 million deaths from cancer each year across the globe; 78,000 in Canada; 2700 deaths in Nova Scotia Cancer is not one disease! >100 types exist

World Health Organization: January 2016 http://www.who.int/features/factfiles/cancer/fachttp://www.who.int/features/factfiles/cancer/facts/en/ind ex9.htmlts/en/index9.html Canadian Cancer Statistics 2016 http://www.cancer.ca/en/cancer-information/cancer-101/canadian- cancer-statistics-publication/?region=on

• Session Objectives

▫ Increase participant understanding of the Nova Scotia Cancer Registry and its role in cancer control ▫ Provide an outline of the Nova Scotia approach to cancer registry operations

 Building a new registry/cancer information system  Emphasis on the role of data linkage

▫ Connect data collection to deliverables

• “the ongoing, timely, and systematic collection and

analysis and dissemination of information on cancer” American Cancer Society – www.org/cancer/cancer‐basics

• Public health tool for disease management
• Scope can vary ‐ but increasingly relies on a

‘network’ of information systems including a central cancer registry

• May target specific areas of the cancer continuum
• r apply to the full spectrum

Canc e r surve illanc e

I ndividual-le ve l

• Health care datasets
• Registries: e.g. disease specific, screening, vaccination
• Treatment: e.g. EMRs, lab systems, physician offices, surveys
• Non‐health care data – demographics, vital statistics,

environmental, risk factors

• Census : population, life tables, socio‐economic

Data Expertise

• Cancer registrars, biostatisticians, epidemiologists, GIS

specialists, nurses, clinicians etc. Software

• SAS, R, STATA, SEER Stats, ArcGIS …

Surve illanc e – basic to o ls

• Data collection tool (database)
• Seeks to identify and enumerate every instance of a

reportable condition within a defined population

• Typically disease focused
• Longitudinal
• Specific parameters (e.g. disease histology, stage, address

at diagnosis etc.)

• Standards (e.g. data elements; collection processes)
• Legislation/authority

What is a …Re g istry?

• Registry purpose impacts design and operations
• Hospital‐based; population‐based; disease specific
• Possible functions
• To understand disease patterns/burden
• Health care planning (i.e. volumes)
• Research (e.g. epidemiological, health services)
• Performance monitoring (e.g. adherence to treatment standards)
• Program evaluation (e.g. screening program)

Re g istry use

• Canadian Cancer Registry – 1969 (Generation 1);

1992 (Generation 2)

Unite d State s

• United States
• Surveillance & End Results Reporting Program (SEER)
• National Program of Cancer Registries (NPCR)
• AJCC National Cancer Data Base (NCDB)
• World – International Association of Cancer Registries (IARC)

Nova Scotia: Population based; start up 1964 with Legislation; 1971 – linkage to pathology

Canc e r re g istry syste ms

CCNS CIS Framework

Oncolog - Cancer Information S ystem

• 2010 – a new path for NS cancer information

▫ Beyond a disease registry

• System acquisition objectives

▫ Procure off the shelf system (future adherence to standards, support etc.) ▫ Increase scope of data collection (e.g. treatment, recurrence) ▫ Increase efficiency (secondary data use/health services use) ▫ Improve timeliness ▫ Enhance reporting capabilities

Oncolog - Cancer Information S ystem

• Supplied/ supported by Onco Inc
• Off the shelf but with some customizations
• Same application used in NL, PEI, NB and BC
• MS-SQL server database
• Went live in Fall of 2012, with an initial data

load from OPIS

• Contains about 215,000 patient records from

1970 onwards

• Holds cancer staging and treatment data on

nearly 255,000 cancer diseases (primaries)

Oncolog - Cancer Information S ystem

Oncolog

Coming in 2017 DAD/ NACRS

(CZ)

Interface Manager

OPIS Vital Stats

OpNote

HL7

ESPRI

HL7 DAD/ NACRS

(all zones)

ARIA DIS

Lab Path reports

Registration and Abstracting Team

Business Rules

• Data sent based on cancer coding within

host systems *

• Level 1: Patient Matching

▫ Probabilistic matching based on Health Card Number, Name, Date of Birth, Sex

• Level 2: Primary (disease) Matching:

▫ Cancer coding and laterality ▫ Time-based rules

Business Rules

• Data sent based on cancer coding within host

systems * doesn’t work for DIS data as no diagnosis data is held

• Data held at Patient level in Oncolog

(customization)

• To ensure data privacy, Patient and Drug files

are sent to DIS and only records for those are returned based on same Patient Matching above

Oncolog - Cancer Information S ystem

OncoNav Oncolog

ESPRI DAD/ NACRS ARIA DIS Vital Stats OpNote

Interface Manager

• OncoType DX
• Rectal Cancer DI Standards
• Lung Biomarkers
• CML Biomarkers

SPECIAL STUDIES

Case Conference Patient Navigation

Lab Path reports

Distress Screening

REPORTING (Gather, SAS, SQL, etc) Worklists

• Registration
• Case Coding
• Case Review

Co mmo n de sc riptive statistic s

• Incidence
• Mortality
• Prevalence
• Survival
• Projections

De sc ribing Canc e r Burde n

Number of new cases of invasive cancer in females by cancer type, Nova Scotia, 2010-14

500 1,000 1,500 2,000 2,500 3,000 3,500 4,000 Cancer Type

Breast Lung and bronchus Colorectal Body of uterus Melanoma of the skin Non-Hodgkin lymphoma Thyroid Kidney and renal pelvis Bladder (including in situ) Ovary Pancreas Leukemia Cervix uteri Oral Multiple myeloma Brain/CNS2 Stomach Esophagus Hodgkin disease Liver Larynx All Other Cancers

Data Source: Nova Scotia Cancer Registry, NSHA, 09/2016

• 12.0 -10.0
• 8.0
• 6.0
• 4.0
• 2.0

0.0 2.0 4.0 6.0 8.0 10.0 12.0 Cervix uteri Colorectal Stomach Lung & bronchus Melanoma of the skin Bladder (including in situ) Kidney & renal pelvis Thyroid Non-Hodgkin lymphoma Leukemia Breast Prostate All Cancers

Average Annual Percent Change (AAPC)

* * * * * * * * * * * * █ Males █ Females

├─┤ Error bars represent a

95% confidence interval * AAPC is significantly different from zero

Average annual percent change (AAPC) in age-standardized incidence rate (ASIR), selected cancers, Nova Scotia, 2004-14

1 ASIR per 100,000, standardized to the 2011 Canadian population.

Data Source: Nova Scotia Cancer Registry, CCNS, NSHA, 09/2016

Males

Survival Period: 2012-2014 Data Source: Nova Scotia Cancer Registry, CCNS, NSHA, 09/2016 25 50 75 100 1 2 3 4 5

Relative Survival (%) Prostate

1 2 3 4 5

Tim e Since Diagnosis (Years) Colorectal

1 2 3 4 5 Stage I Stage II Stage III Stage IV

Lung

Relative survival rate for common cancer types in males by stage at diagnosis in Nova Scotia, estimated from the 2012-2014 period

Survival Period: 2012-2014 Data Source: Nova Scotia Cancer Registry, NSHA, 09/2016

Canadian Cancer Statistics 2016

• Increasing requirement to support system performance
• Focus for NSHA Program of Care for Cancer
• Evolving area – lots to consider
• Ongoing versus Periodic
• CRIS only one aspect
• Local versus national requirements
• CRIS can be used to monitor programs in one area of

cancer continuum through outcomes in another

• e.g. screening programs

Mo nito ring / E valuatio n

Pre-operative Radiation Therapy for Patients with S tage II or III Rectal Cancer

S tandards & Guidelines Monitoring –Local

Example: pre-treatment imaging standards for staging investigation newly diagnosed rectal cancer

A Total cases expected in 20 15 290 % B Cases reviewed by coders 66 23 % (as % of A) C With pre-treatment CT of Abdomen and Pelvis 53 80 % (as percent of B) D Imaging within 14 days of initial diagnosis 47 89 % (as % of C) E Pre-treatment MRI of Pelvis after CT 32 60 % (as % of C) F MRI within 7 days of pre- treatment CT 32 100 % (as % of E)

Re se arc h Oppo rtunitie s

• Ac c e ss to CRI

S data fo r appro ve d re se arc h

• RE

B & privac y pro c e sse s to be fo llo we d

• $42‐million national study
• Investigate how genetics, the environment, lifestyle, and

behaviour contribute to the development of cancer

• Follows the health of 300,000 people in BC, AB, ON, QC and

Atlantic Canada for 30 years

• On the East Coast, the Atlantic PATH recruited 30,000 men

and women from NS, NB, PEI, NFL and Labrador

• Now starting process to link Path cohort to specific

datasets including cancer registry

Curre nt Study E xample s

• Cancer Costing Study – CIHR funded, multi-province

project, PI based in Ontario; local analysis at DHW

• Examining overall costs to manage specific

cancer diagnoses

• SURV-Mark – International cancer survival study

(7+countries; coordinated by Cancer Research United Kingdom – analysis at IARC

• Local studies – examining specific hypotheses
• Diagnosis of lung cancer via emergency
• Management of pancreatic cancer
• Management of head & neck cancer

T hank Yo u!

Questions?

The Let’s Ta lk Inform a tics series meet the criteria outlined in the Manipro+ Certification guide for non-certified credits by providing content aimed at improving computer skills as applied to learning and access to information. To receive a certificate of attendance for today’s session, there is a place for you to provide your email address in the evaluation survey. Thank you for attending today’s event.