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 otherwise) with a pharmaceutical, medical device, health care informatics organization, 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
Canc e r surve illanc e • “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 or apply to the full spectrum
Surve illanc e – basic to o ls Data 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 Expertise • Cancer registrars, biostatisticians, epidemiologists, GIS specialists, nurses, clinicians etc. Software • SAS, R, STATA, SEER Stats, ArcGIS …
What is a …Re g istry? • 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
Re g istry use • 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)
Canc e r re g istry syste ms • Canadian Cancer Registry – 1969 (Generation 1); 1992 (Generation 2) Nova Scotia: Population based; start up 1964 with Legislation; 1971 – linkage to pathology • United States • Surveillance & End Results Reporting Program (SEER) Unite d State s • National Program of Cancer Registries (NPCR) • AJCC National Cancer Data Base (NCDB) • World – International Association of Cancer Registries (IARC)
Framework CIS CCNS
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)
ystem Oncolog - Cancer Information S
DAD/ Vital OpNote NACRS Stats (CZ) Coming in 2017 HL7 OPIS DIS Interface Manager ARIA HL7 Registration and Oncolog Abstracting Team ESPRI DAD/ Lab Path reports NACRS (all zones)
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
ystem Oncolog - Cancer Information S
• OncoType DX • Rectal Cancer DI Standards SPECIAL Case • Lung Biomarkers Conference STUDIES Vital • CML Biomarkers Stats OpNote Lab Path reports DIS Interface Oncolog Manager ARIA OncoNav ESPRI Distress DAD/ Screening NACRS Patient Navigation Worklists REPORTING • Registration (Gather, SAS, • Case Coding SQL, etc) • Case Review
De sc ribing Canc e r Burde n Co mmo n de sc riptive statistic s • Incidence • Mortality • Prevalence • Survival • Projections
Number of new cases of invasive cancer in females by cancer type, Nova Scotia, 2010-14 4,000 Breast Lung and bronchus 3,500 Colorectal Body of uterus Melanoma of the skin 3,000 Non-Hodgkin lymphoma Thyroid Kidney and renal pelvis 2,500 Bladder (including in situ) Ovary Pancreas 2,000 Leukemia Cervix uteri 1,500 Oral Multiple myeloma Brain/CNS2 1,000 Stomach Esophagus Hodgkin disease 500 Liver Larynx 0 All Other Cancers Cancer Type Data Source: Nova Scotia Cancer Registry, NSHA, 09/2016
Average annual percent change (AAPC) in age-standardized incidence rate (ASIR), selected cancers, Nova Scotia, 2004-14 * █ Males █ Females All Cancers ├─┤ Error bars represent a * 95% confidence interval Prostate * AAPC is significantly Breast different from zero * * Leukemia Non-Hodgkin lymphoma Thyroid Kidney & renal pelvis * Bladder (including in situ) * * Melanoma of the skin * Lung & bronchus * * Stomach * Colorectal Cervix uteri * -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 Average Annual Percent Change (AAPC) 1 ASIR per 100,000, standardized to the 2011 Canadian population. Data Source: Nova Scotia Cancer Registry, CCNS, NSHA, 09/2016
Relative survival rate for common cancer types in males by stage at diagnosis in Nova Scotia, estimated from the 2012-2014 period Males Stage I Stage II Prostate Colorectal Lung Stage III Stage IV 100 Relative Survival (%) 75 50 25 0 0 1 2 3 4 5 0 1 2 3 4 5 0 1 2 3 4 5 Tim e Since Diagnosis (Years) Survival Period: 2012-2014 Data Source: Nova Scotia Cancer Registry, NSHA, 09/2016 Survival Period: 2012-2014 Data Source: Nova Scotia Cancer Registry, CCNS, NSHA, 09/2016
Canadian Cancer Statistics 2016
Mo nito ring / E valuatio n • 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
Pre-operative Radiation Therapy for Patients with S tage II or III Rectal Cancer
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