T HE CREATION OF A CANADIAN LIMITED USE DATA FILE

1. THE CREATION OF A CANADIAN LIMITED USE DATA FILE June 2009 North American Association of Central Cancer Registries San Diego, CA Les Mery Program Director, Surveillance Canadian Partnership Against Cancer

2. ACKNOWLEDGEMENTS • Surveillance Action Group • Canadian Association of Provincial Cancer Agencies • Canadian Cancer Action Network • Canadian Council of Cancer Registries • Canadian Partnership Against Cancer • Public Health Agency of Canada • Statistics Canada • Contributing Authors: • E. Holowaty, Cancer Care Ontario; • N. St-Jacques, Cancer Care Nova Scotia; and, • G. Kasbia, formerly Canadian Partnership Against Cancer

3. OUTLINE • Rationale • Cancer surveillance in Canada • Definition and approach • Current status • Considerations • Summary

4. CANCER SURVEILLANCE Why a Priority?

5. CANCER SURVEILLANCE: RATIONALE “To collect data and not use it, is not only wasteful, it is unethical.” J. Epidemiologist Smith

6. Canadian population Secondary data: Health care services Demographical Social Economical Environmental Geographical Cancer registries Data Analysis and Interpretation Health Interventions CANCER SURVEILLANCE IN PRACTICE

7. CANCER SURVEILLANCE IN PRACTICE Canadian population Secondary data: Health care services Demographical Social Economical Environmental Geographical • Current situation: - Limited access to national data - Very limited linkage to secondary data • - Limited capacity • - Disparities in expertise • - Poor integration - Variability in methodology, difficulties to perform comparisons Cancer registries Data Analysis and Interpretation Health Interventions

8. Enhance the cancerexperience of Canadians Utilize existing data Explore data across the cancer continuum Canadian population Support collaboration of multidisciplinary teams Secondary data: Health care services Demographical Social Economical Environmental Geographical Explore national and provincial data Cancer registries Implement best available knowledge Data Analysis and Interpretation Build capacity Explore improved knowledge translation strategies Health Interventions Produce information to better inform and monitor cancer control interventions STRATEGIC INITIATIVE: CANCER SURVEILLANCE AND EPIDEMIOLOGY NETWORKS, $5M (2008—12)

9. HI LEVEL BUSINESS ARCHITECTURE Provincial and Territorial Cancer Registries (PTCR) Canadian Cancer Registry Hospital / Tertiary Centres: Collect and Transfer data to PTCRs Hospital / Tertiary Centres: Collect and Transfer data to PTCRs Governed by a representative Council, with Statistics Canada serving as data steward

10. DEFINATION OF A LIMITED USE FILE An electronic file comprised of individual, de-identified, cancer registry data • Used to analyze and report information Requires approved policies on data access and confidentiality Primary audience: • Provincial / territorial cancer registries and government groups • National Organizations with a mandate in cancer surveillance • University and hospital research groups

11. CURRENT STATUS National Access: • Confined to Statistics Canada employees only • Access within Public Health Agency of Canada and to external requests limited • Few meaningful external collaborations have been successful Activities (July 2008 – April 2009): • Workshop of key stakeholders, literature review and legal analysis • Engagement, education and common principles developed • Agreed to as a priority from all key stakeholders (July 2008)

12. REVIEW OF INTERNATIONAL PRACTICES: SUMMARY FINDINGS Internationally, access varies from organization and jurisdictions • Full spectrum exists • Privacy laws and agreements form foundation • Essential to understand and comply with these Well – established guidelines and examples exists • SEER, IACR, NAACCR Decisions to grant access must weigh risk vs. utility • Potential harm to individual and organizations Statistical and computational methods can be used to minimize risks • Data use guidelines and policies

13. APPROACH Collaboration between all key stakeholders • The CCR selected as optimal solution • Examination of other means if necessary • Build on current legal agreements with the Public Health Agency of Canada and Health Canada • Establishing new legal agreements • Each of the 13 Provinces /Territories and the Canadian Partnership Against Cancer (CPAC) PHASES: • Copy of CCR to: CPAC; Analytic Networks; and PTCRS • Expansion to complete SEER-like Limited Use File

14. KEY PRINCIPLES: ADOPTED FROM SEER APPROACH Fundamental concept in initial data collection agreements • View to utilize data • Recognition that central capacity could not meet demands Simple application form • Commitment to provide a decision within two working days • Responsibility for use and protection resides with applicant* Supporting material • Training on data set (data dictionary) • Statistical software *No documented breach of privacy has been reported since its inception (1973) - communication with D. Stinchcomb

15. KEY PRINCPLES (2): SEER APPROACH TO PROVISIONS OF USE Used only by authorized applicant for statistical reporting • SEER to be cited in all publications Protection of individual information • Can not publish information on a single individual • Small cell sizes should be avoided • No linkage of file • Signed agreements Protocol re: personnel information breach • No use of information • Notification to SEER program • Statistical software

16. CONSIDERATIONS • Engagement of senior decision makers to enable access • Under utilization Marginal relevance Lack of awareness of issue • Need for increased understanding / education re: legal policies • Balance of privacy and confidentiality vs. public good • Culture of centralized expertise • Addressed through knowledge translation and innovation • Reward collaboration • ‘Data purification through data use’ • Logistical issues • Format to receive and adjudicate requests • Multi organizational agreement on terms and conditions

17. SUMMARY • Canada benefits from a rich history of cancer registration • Access to national cancer data is limited • Opportunities to apply new cancer control interventions have emerged • Greater need to increase the quality, breadth and timelines of surveillance products to inform and monitor cancer control • Progress beginning for increased data access • Agreed to priority and approach from key stakeholders • Goal of a SEER like Limited Use File • Phased approach

18. THANK YOU!