National Cancer Registry of Ireland – Collecting quality data to drive improvements in cancer

outcomes in Ireland

Prof Kerri Clough-Gorr

1 March2017

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Individuals make up the picture & the picture needs every individual to tell its story

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Cancer patients are everyone & everyone knows a cancer patient… Every cancer patient matters!

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Cancer in Ireland

Patient experiences are the data that inform practice, planning and policy that then improves patient experiences and outcomes…

Collect Individual

Cancer Patient

Experience

Combine for Population

Level Cancer Experience

Inform Medical

Practice & Health Policy

Evidence-based

Medical Practice &

Health Policy

Improved Cancer

Outcomes

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Cancer in Ireland

We need to tell the story of cancer in Ireland in order to improve the cancer experience and outcomes

We can’t accurately tell the story of cancer without capturing all the individual stories… every cancer patient contributes to our understanding of the cancer experience

We can’t improve the cancer experience and outcomes if the data are not accurate and complete… otherwise the story of what’s happening for cancer patients will be distorted

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The Cancer Journey

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National Cancer Registry Ireland (NCRI)

• NCRI, a statutory body funded by Department of Health, began telling the

story of cancer in Ireland in 1994

• Our dedicated experienced staff of >50 tell the story by…

⎻ bringing together accurate cancer data from every person diagnosed with cancer in

Ireland

⎻ recording & reporting on all new cases of cancer (37,591 per year 2012-2014)

⎻ reporting on all cancer deaths (8,655 per year 2011-2013)

⎻ reporting on cancer survivors (139,526 patients still alive at the end of 2014)

⎻ disseminating cancer information & maintaining an active cancer research

programme

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The NCRI Vision

• To provide cancer intelligence for the improvement of patient outcomes in Ireland

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The Role of NCRI

• To identify, collect, classify, record, store and analyse information on cancers and cancer patients

• To use the data in research and disseminating for the planning and management of services

• To advise, inform and assist the Minister of Health and policy makers with regard to cancer services

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Sources of Cancer Data in Ireland

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Types of Cancer Data Collected

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• Incidence (newly diagnosed cases)

• Tumour characteristics (ICD03 topography & morphology, TNM stage, Ann Arbor lymphoma stage, grade, selected receptors)

• Patient characteristics (e.g. name, address, date of birth, marital status, smoking, occupation)

• First-line treatments

• Mortality outcomes (date of death, cause of death)

Examples of Cancer Data

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Cancer Data Quality in Ireland

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• NCRI data quality is key to accurately telling the cancer story

• NCRI performs both internal an external data quality measures to ensure the data collected accurately reflects the patient experience and is complete

Cancer Data Quality in Ireland

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• Internal

• Regularly perform approximately 100 database checks (e.g. patient demographics, invalid site/sex combinations, etc.)

• Regular quality & performance indicator report (e.g. number of registrations, death certificate only rates, timeliness, completeness, etc.)

• Regularly assess data trends for anomalies & investigate

• External

• The United Kingdom and Ireland Association of Cancer Registries (UKIARC) performance indicator report

• European Union Joint Research Centre (JRC)- European Network of Cancer Registries (ENCR) data quality checks

The Importance of Cancer Data

• Cancer data can be used for cancer control, epidemiological research, public health program planning, and patient care improvement

• National cancer registration helps us understand the disease better and utilize our resources to the best effect in prevention and treatment

Ultimately, all of these activities reduce the burden of cancer!

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How NCRI Data is Used

• Annual reports on incidence, treatment, survival, mortality

• Website statistics & data-downloads

• Special reports (e.g. projections, cancer atlases)

• Scientific papers (basic data or in combination additional data)

• Provision of data to Department of Health Public Health Information System (PHIS)

• Input to cancer strategy planning and reviews

• Answering queries from public, media, hospitals, researchers, Government (e.g. PQs)

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Cancers Diagnosed in Ireland

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Cancers Trends in Ireland

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Colorectal cancer in Ireland

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Cancer inequalities in Ireland

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The Changing Cancer Experience

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• Cancer used to be considered an acute disease - short time between diagnosis & death

• incidence and mortality major concerns

• Cancer is now considered a chronic disease • Incidence and mortality important

• Survivorship now a major concern - increasing time between diagnosis & death e.g. increasing & improving tests for earlier diagnosis, increasing & improving cancer treatments

Annual number of new tumours and treatment episodes

Cancer Survival in Ireland

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The Future of Cancer Data in Ireland

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• Here are a few ways NCRI data can be more relevant to both clinical practice and service planning in the future…

The Future of Cancer Data in Ireland

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• Cancer registration should be mandatory

• Data collection & availability should be more timely

• The routine dataset should be expanded to include, for instance, comorbidity, family history and risk factors

• The Registry should provide longer follow-up information on patients

• Data should be made as widely available as possible

• Research using both registration data & additional data should be encouraged

Thanks to …

• Cancer patients! – who’s experience it is

• NCRI staff – data collection & quality assurance, data preparation & dissemination

• Hospitals, clinics & their staff – access to patient records, pathology notes etc.

• Central Statistics Office & General Register Office – population & mortality data

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More information at www.ncri.ie

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