Abstract. It s peace of mind knowing that we ve done everything that is possible to meet industry standards for de-identification. Dr.

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2 Abstract In this presentation I will discuss the adoption of the Privacy Analytics Risk Assessment Tool (PARAT) by the Institute for Clinical Evaluative Sciences (ICES), for the Ontario Cancer Data Linkage Program (CD- Link) and its subsequent success. It s peace of mind knowing that we ve done everything that is possible to meet industry standards for de-identification. Dr. Craig Earle

3 Privacy Analytics provides the only commercially available integrated de-identification and data masking and product on the market today that is capable of handling longitudinal data Focused on health data, based on HIPAA and other international standards; Customers across North America Commercialized in 2007

4 Dr. Khaled El Emam Founder and CEO of Privacy Analytics, Inc. and Director of Electronic Health Information Laboratory Canada Research Chair in Electronic Health Information and Associate Professor at the University of Ottawa, Faculty of Medicine Senior Investigator at the Children's Hospital of Eastern Ontario Research Institute Main area of research - developing techniques for health data de-identification or anonymization and secure disease surveillance for public health purposes. One of a handful of individuals known to be qualified to de-identify PHI under the HIPAA Privacy Rule Statistical Standard Founding meeting Individual Ambassador, Privacy by Design

5 Gartner Big Data "Cool Vendor in Risk Management, Privacy & Compliance", 2012 De-Identification is more than removing names and SSNs Proper de-identification can retain the analytic value in data Use Safe Harbor for deidentification and your data can be rendered useless.

6 The financial and human costs of personal information breaches are high

7 Compliance with regulations is not optional, but how you get there is

8 Dr. Craig Earle Medical Oncologist specializing in gastrointestinal malignancies at the Odette Cancer Center at Sunnybrook Health Sciences Centre Sr. Scientist at the Institute for Clinical Evaluative Sciences Director of the Health Services Research Program for Cancer Care Ontario (CCO) and the Ontario Institute for Cancer Research (OICR) Currently a Professor in the Department of Medicine at the University of Toronto.

9 HIPAA Experience Dr. Earle spent 10 years at the Dana-Farber Cancer Institute and Brigham & Women s Hospital in Boston, Associate Professor of Medicine at Harvard Medical School and Associate Professor of Health Policy and Management at the Harvard School of Public Health before returning to Ontario in Founding Director of the Lance Armstrong Foundation Adult Survivorship Clinic at Dana-Farber. Member of the American Society of Clinical Oncologists since 1999; member of Quality of Care Committee (since 2008) and Chair ( ), Measures Working Group ( ), Quality Oncology Practice Initiative Steering Group ( ).

10 Dr. Earle s Vision To link Ontario s rich cancer data resources and to provide the de-identified data directly to health services researchers. To consult widely to ensure the maximum privacy for Ontario, including Ontario s Information & Privacy Commissioner, Ann Cavoukian, who expressed her support for the decision to use PARAT. Khaled El Emam has a great reputation and having him and his product behind what we re doing, I think was very impressive, especially at the Privacy Commission level. Dr. Craig Earle

11 Institute for Clinical & Evaluative Sciences & The Ontario Cancer Data Linkage Program (CD-Link) ICES is Canada s leading health services research institute established in Has played a key role in providing unique scientific insights to help policymakers, managers, planners, practitioners, and other researchers shape the future direction of the Ontario health care system. Cd-link was established in 2010 within ICES

12 PRE PARAT ADOPTION & CD-LINK Complicated and costly access to research data. Researchers seeking access to cancer data would travel to Toronto, plan on lengthy stays inside secure offices and mutter a little prayer, hoping not to forget anything before making the journey home. Since the implementation of PARAT, all that has changed for cd-link.

13 POST PARAT ADOPTION Researchers submit a research proposal, define a plan, wait for the application of PARAT. DE-ID DATA Then receive a copy of the disk of the de-identified research data. gsec_id=6159&item_id=6159

14 PROJECTS USING PARAT DE- IDENTIFIED DATA SETS CIHI Discharge Abstract Database (CIHI-DAD) CIHI National Ambulatory Care Reporting System (NACRS) Continuing Care Reporting System (CCRS) CytoBase (cervical screening) Home Care Database (HCD) / Ontario Home Care Administrative System (OHCAS) New Drug Funding Program (NDFP) National Rehabilitation Reporting System (NRS) Ontario Breast Screening Program (OBSP) Ontario Cancer Registry (OCR) Ontario Drug Benefit Claims (ODB) Ontario Health Insurance Plan Claims Database (OHIP) Registered Persons Data Base (RPDB)

15 PEER REVIEWED PUBLICATIONS Principal Investigator: R. Thein. Jembere N, Campitelli MA, Sherman M, Feld J, Lou W, Peacock S, Yoshida E, Krahn MD, Earle C, Thein HH. Influence of Socioeconomic Status on Survival of Hepatocellular Carcinoma in the Ontario Population; a populationbased study, PLoS One. 2012;7(7):e Epub 2012 Jul 13. A number of manuscripts in progress or under review

16 Resources Contact Nathalie Holmes ext

17 Solutions from Privacy Analytics PARAT Software: De-identification and masking Software Clients are trained on de-identification methodology and then run the software themselves on their own data One-off Certification Services: Client sends us the data We use the PARAT software and other analytical tools to deidentify and certify data sets Continuous Certification Services: Client sends us the data We use PARAT to produce a spec for creating a certified data set Client runs spec on PARAT for continuous data release