A Balancing Act Thursday November 3, 2005 Metro Toronto Convention Center

The importance of destroying health records permanently and security cannot be overemphasized. The recent fiasco involving identifiable health records found strewn across the streets of downtown Toronto demonstrates that you can take nothing for granted. Learn what practical and procedures you should have in place.

Moderator:
Pat Jeselon provides consulting services to the broader health care sector, government and the private sector in health information management. She specializes in the electronic health record, and privacy as it pertains to the electronic health record. Pat has more than 30 combined years of clinical experience, as well as extensive experience in health informatics having worked for private, not-for-profit and public health provider organizations. As a past President of COACH, Canada?s health informatics organization, and as the President of the B.C. Health Information Management Professionals Society (BCHIMPS) she has contributed significantly to the advancement of the Canadian health informatics industry in Canada. She was a key contributor to the curriculum of COACH?s ongoing member education program on the Electronic Health Record and facilitated several of the workshops across Canada. For the past six years, Pat has centered her consulting practice within Toronto consulting to several large teaching hospitals, the Ministry of Health and Long Term Care (MOHLTC) and two Ministry Agencies.

Speakers:
Commissioner Dr. Ann Cavoukian (see above)
Bob Johnson
Rich Roxborough is the Executive Director of reBOOT Canada. reBOOT Canada is a non-profit organization providing computer hardware, training and technical support to charities, non-profits and people with limited access to technology. Since 1996 reBOOT Canada has distributed over 60,000 pieces of computer equipment to charitable organizations across Canada.

Consent is the cornerstone of the Personal Health Information Protection Act, 2004. The Act requires consent prior to the collection, use or disclosure of personal health information unless it is permitted or required by the Act. This session will discuss the conditions that must be satisfied in obtaining a valid consent, the type of consent required in various circumstances (express or implied) and from whom consent may be obtained when the individual to whom the personal health information relates is capable, incapable, a minor or deceased.

Speakers:
Manuela Di Re was called to the bar of the Province of Ontario in 1998 and to the bar of the State of New York in 2000. Since her call to the bar of the Province of Ontario she has practiced exclusively in the area of health law. She began her practice as associate counsel at McCarthy Tétrault representing physicians in claims for medical malpractice and professional negligence before the courts and well as in proceedings before the College of Physicians and Surgeons of Ontario, the Health Services Appeal and Review Board and other administrative tribunals. She then continued her practice as legal counsel to a board of health, an ambulance service and two homes for the aged. In January 2004, she joined the Office of the Information and Privacy Commissioner of Ontario as health law legal counsel.

Mary Jane Dykeman is a Toronto lawyer who advises health care clients on a broad range of issues, including health privacy, mental health, consent and capacity, risk management, and regulation of the health professions. She currently acts as counsel to a Toronto teaching hospital, and recently worked with the Canadian Mental Health Association - Ontario Division to produce a privacy toolkit for the addictions and mental health sectors. Mary Jane is the editor of two national publications, Risk Management in Canadian Health Care and the Canadian Health Law Practice Manual, and a co-author of Canadian Nurses and the Law. She has taught mental health law at Queen's and Osgoode Hall Law Schools, in their undergraduate and graduate programs, respectively.

Halyna N. Perun is counsel with the Legal Services Branch of the Ministry of Health and Long-Term Care. She is a graduate of Osgoode Hall Law School. She joined the Ministry's Legal Services Branch in 1987 and has provided advice to the Ministry on a variety of portfolios: regulated health professions, public hospitals, mental health, freedom of information and protection of privacy. Currently she has responsibility for health privacy as well as drug program issues. Halyna worked on the development and implementation of the Health Information Protection Act, 2004. Its two schedules, the Personal Health Information Protection Act, 2004 and the Quality of Care Information Protection Act, 2004 came into force in Ontario on November 1, 2004.

In this session, three of Ontario's leading experts on research, privacy and research ethics will provide answers to some of the more challenging questions facing the research community in terms of complying with PHIPA and best privacy practices. Issues that will be discussed include:

• The role of implied versus express consent in the research process
• Best practices for recruiting research participants
• How to deal with the new obligations imposed on research ethics boards?
• How do you decide when it is appropriate to waive the consent requirement?
• How do you ensure that consent to participate in research is truly informed?
• Is consent the best way to ensure privacy protection?
• What are the costs and benefits of implementing privacy protections in the research process?
• How can the research community enhance transparency and gain public support for the non-consensual use of personal health information for research purposes?

Moderator: Debra Grant is a Senior Health Privacy Specialist for the Information and Privacy Commissioner for the Province of Ontario (IPC), the independent body that oversees the provincial Freedom of Information and Protection of Privacy Act, the Municipal Freedom of Information and Protection of Privacy Act, and the new Personal Health Information Protection Act. She graduated in 1991 with a Ph.D. in social psychology from York University. For the past fifteen years, she has worked for the IPC conducting research and developing policies on access and privacy issues in relation to a wide variety of topics including personal health information. She has worked on numerous submissions to the Ontario government on existing and proposed public and private sector privacy legislation and provides expert advice to government and health sector organizations on privacy issues in relation to personal health information.

Speakers:
Pam Slaughter is the Privacy Officer at the Institute for Clinical Evaluative Sciences (ICES) in Toronto, Canada. Her more than 20-year career in health research has been concentrated in the areas of cardiovascular disease and health services research, but her current research focus is privacy protections in Health Services and Policy Research; she is particularly interested in the development of a harmonized national privacy standard for institutes engaged in this type of research. She is active on many committees, including the Research Ethics Board of Sunnybrook & Women's College HSC.

Ronald J. Heslegrave, Ph.D., is currently an Associate Professor in the Departments of Psychiatry, Public Health, School of Graduate Studies and the Institute of Medical Sciences at the University of Toronto. Over the last 25 years he has served as a working scientist in a number of areas including the effects of sleep deprivation on cognitive performance and the impact of medication on quality of life. However, for the last 14 years, he has been the Chair of various Research Ethics Boards in academic hospitals connected to the University of Toronto. These Boards which review all medical research involving humans carried out at the Insitution. Dr. Heslegrave has chaired a number of hospital REBs including the University Health Network (including the Toronto General, Toronto Western, Princess Margaret (Cancer) Hospitals), Mount Sinai Hospital, former Wellesley Hospital, Baycrest Centre for Geriatric Care and St. Michael's Hospital. Together these hospitals conduct over 1800 new medical research protocols each year. He was recently been appointed as the inaugural Chair of the Ontario Cancer Research Ethics Board which reviews all multiple-site cancer trials in Ontario.

Dr. Eric Holowaty is a cancer epidemiologist at Cancer Care Ontario, where he is a Senior Scientist and Director, Informatics Research and Development. He is also an Associate Professor in the Department of Public Health Sciences at the University of Toronto, where his responsibilities include teaching as well as thesis supervision. His research interests include historical record linkage cohort studies, second primary cancers, health services research, cancer registration and quality control. He holds a number of research grants and contracts with Health Canada, the National Cancer Institute of Canada and the U.S. National Cancer Institute.

Although PHIPA is a consent based statute, it allows particular disclosures of personal health information to take place without consent. Focussing on sections 38 to 50 of the Act, this panel will discuss some of the situations where custodians may want to disclose information or where information will be requested or demanded from them. We will explore some of the many criteria that may come into play in determining whether those non-consensual disclosures may lawfully be made.

Moderator:
Michelle Chibba is Manager, Policy & Compliance at the Information and Privacy Commissioner/Ontario. Michelle brings to this position significant policy and planning experience in the health sector. Prior to joining the IPC, Michelle managed several strategic initiatives at the Ontario Ministry of Health and Long-Term Care. Throughout her career, Michelle has worked with many of the stakeholder groups in the health sector including professional association, hospitals, long-term care and health care companies. Michelle received her Masters degree from Georgetown University, Washington, D.C. where she focused on the health sector and ethics.

Speakers:
Jodi L.H. Butts serves as Mount Sinai Hospital?s Legal Counsel and Corporate Privacy Officer. Ms. Butts obtained her articles at Lerners LLP where her practice focused on complex commercial and personal injury matters. In 2000, Ms. Butts was one of the founding partners of the boutique litigation firm, Brannan Meiklejohn Butts LLP. Ms. Butts practiced in the areas of employment, insurance and personal injury disputes, with a special focus on health law matters. She has represented individuals, employers and institutional clients before all levels of the Ontario courts. She currently sits on the Board of Directors of the Community Head Injury Resource Services of Toronto (CHIRS), a community based multi-service rehabilitation agency for adults suffering from acquired brain injuries.

Judith Goldstein, Legal Counsel, Office of the Information & Privacy Commissioner

J. Michelle Farrell, Counsel, Toronto Police Service

With a year of experience as the PHIPA oversight body, the IPC has established its processes for dealing with the inappropriate collection, use or disclosure of personal health information and, based on its experience, has advice to offer HICs. This session will provide helpful information on what to expect when the IPC gets involved in a PHIPA complaint, provide advice on what a HIC should do when a privacy breach has been discovered and give practical examples of how mediated agreements have resolved complaints.

Moderator: Brain Beamish, Assistant Commissioner, Office of the Information & Privacy Commissioner / Ontario

Speakers:
Mona Wong is currently the Manager of Mediation for the Office of the Information and Privacy Commissioner/Ontario (the IPC). In this role, she oversees the mediation process in matters of access to government-held information and the protection of personal privacy. Prior to this, Mona worked for the Ministry of Health's Freedom of Information and Protection of Privacy Office, beginning in February 1990, in various positions. She was the Ministry?s Freedom of Information Co-ordinator when she left to join the IPC in March of 1999.

Robert Binstock is the Registrar for the Office of the Information and Privacy Commissioner/Ontario (the IPC). In this role, he has the authority to screen out and to stream appeals, privacy complaints and personal health information complaints in accordance with established IPC procedures. He is responsible for the Intake and Administrative Support functions for the Tribunal Services Department. Robert joined the IPC in 1989 as an Appeals Officer and then later held the positions of Inquiry Review Officer and Appeals Supervisor.

Joseph Sommer is an Intake Analyst for the Office of the Information and Privacy Commissioner/Ontario (the IPC). In this role, he assists members of the public with appeals, privacy complaints and personal health information complaints in accordance with established IPC procedures. Joseph joined the IPC in 2004 shortly after the Personal Health Information Protection Act came into force. Prior to joining the IPC, Joseph was employed at the College of Physicians and Surgeons of Ontario as an Intake Officer and Physician Advisor. In 2001, Joseph completed a Master of Applied Science Degree at the University of Waterloo and in 1994 graduated with a Bachelor of Science Degree from the University of Toronto.

Nancy Ferguson is an investigator/mediator at the Information and Privacy Commissioner of Ontario. She is a graduate of Trent University and Osgoode Hall Law School. Her experience includes work as an Investigator and Team Leader at the College of Psychologists of Ontario, and at the Law Society of Upper Canada in the Investigation Department.

Privacy Impact Assessments, which have become a standard part of "privacy best practices," are formal risk management tools to identify and mitigate the actual or potential effects that a proposed or existing information system, technology or program may have on individuals' privacy. This session will discuss the benefits of a privacy impact assessment, the methodology for conducting a high-quality privacy impact assessment and will discuss the privacy impact assessment template developed by the Information and Privacy Commissioner/Ontario for the Personal Health Information Protection Act, 2004.

Speakers:
Miyo Yamashita is the lead privacy consultant and owner of Anzen Consulting Ltd. She has a Ph.D. in Communications from McGill University where she specialized in the impact of data protection laws on privacy practices. Some of her clients have included: the Association for Healthcare Philanthropy, the Alberta Medical Association, Bridgepoint Health, Canada Health Infoway Inc., Canadian Blood Services, GlaxoSmithKline, Janssen-Ortho, the Ontario Cancer Research Network, the Ontario Ministry of Health and Long Term Care, The Ottawa Hospital, the University Health Network, and the Winnipeg Regional Health Authority. In December 2001, Miyo was hired as the first Chief Privacy Officer (CPO) at the University Health Network, one of the country's largest teaching hospitals with over 11,000 staff and 1 million patient visits annually. Miyo is the former Chair of the Privacy and Security Working Group for the Ontario Hospital Association's (OHA) E-Health Council and was a contributing author to the Guidelines for Managing Privacy, Data Protection and Security for Ontario Hospitals, released in July 2003 by the OHA.

Peter Hope-Tindall is Technical Director and Chief Privacy Architect of dataPrivacy Partners Ltd. Formerly, he was special advisor to the Information and Privacy Commissioner/Ontario for biometrics and cryptography where he conducted privacy audits/assessments and monitored the development of large government systems having a significant privacy component. Mr. Hope-Tindall recently completed an engagement as Privacy Architect to the government of Ontario Smart Card Project.

Manuela Di Re (see above)