1. www.ipc.on.ca Health Information Protection Act: A Major Step in Healthcare Privacy Ann Cavoukian, Ph.D. Information & Privacy Commissioner/Ontario St. Michael’s Hospital Toronto November 5, 2004

2. www.ipc.on.ca Slide 2 Health Privacy is Critical  The need for privacy has never been greater: Extreme sensitivity of personal health information Patchwork of rules across the health sector; with some areas currently unregulated Increasing electronic exchanges of health information Multiple providers involved in health care of an individual – need to integrate services Development of health networks Growing emphasis on improved use of technology, including computerized patient records

3. www.ipc.on.ca Slide 3 Unique Characteristics of Personal Health Information  Highly sensitive and personal in nature  Must be shared immediately and accurately among a range of health care providers for the benefit of the individual  Widely used and disclosed for secondary purposes that are seen to be in the public interest (e.g., research, planning, fraud investigation, quality assurance)

4. www.ipc.on.ca Slide 4 PHIPA – Based on Fair Information Practices  Accountability  Identifying Purposes  Consent  Limiting Collection  Limiting Use, Disclosure, Retention  Accuracy  Safeguards  Openness  Individual Access  Challenging Compliance

5. www.ipc.on.ca Slide 5 Strengths of PHIPA  Implied consent for sharing of personal health information within circle of care  Creation of health data institute to address criticism of “directed disclosures”  Open regulation-making process to bring public scrutiny to future regulations  Adequate powers of investigation to ensure that complaints are properly reviewed

6. www.ipc.on.ca Slide 6 Scope of PHIPA  Health information custodians (HICs) that collect, use and disclose personal health information (PHI)  Non-health information custodians where they receive personal health information from a health information custodian (use and disclosure provisions)

7. www.ipc.on.ca Slide 7 Health Information Custodians  Definition includes: Health care practitioner Hospitals and independent health facilities Homes for the aged and nursing homes Pharmacies Laboratories Home for special care A centre, program or service for community health or mental health

8. www.ipc.on.ca Slide 8 Records Management: General Practices  Must take reasonable steps to ensure accuracy  Must maintain the security of PHI  Must have a contact person to ensure compliance with Act, respond to access/correction requests, inquiries and complaints from public  Must have information practices in place that comply with the Act  Must make available a written statement of information practices  Must be responsible for actions of agents

9. www.ipc.on.ca Slide 9 PHIPA Consent  Consent is required for the collection, use, disclosure of PHI, subject to specific exceptions  Consent must:  be a consent of the individual  be knowledgeable  relate to the information  not be obtained through deception or coercion  Consent may be express or implied

10. www.ipc.on.ca Slide 10 Meaningful Consent Forms  Notices and consent forms must be concise and understandable to be effective  PIPEDA notices and consents used by some health professionals are lengthy, confusing and counterproductive  Use notices and consent forms to educate and inform patients, not as an exercise in legal drafting

11. www.ipc.on.ca Slide 11 Express Consent  required when a custodian discloses to a non- custodian  required when a custodian discloses to another custodian for a purpose other than providing health care to the individual  required for marketing and fundraising (when using more than name and specified contact information)

12. www.ipc.on.ca Slide 12 Implied Consent  custodians may imply consent when disclosing personal health information to other custodians for the purpose of providing health care to the individual  exception – if the individual expressly withholds or withdraws consent (lock box)

13. www.ipc.on.ca Slide 13 Checks on the Lock Box  Notification – if the custodian who discloses believes that all information necessary for the the provision of health care has not been disclosed, the custodian must notify the recipient  Override – the custodian may disclose if disclosure is necessary to eliminate or reduce a significant risk of serious bodily harm to a person or a group of persons

14. www.ipc.on.ca Slide 14 Delayed Implementation of the Lock Box  public hospitals have until November 1, 2005 to implement the lock box

15. www.ipc.on.ca Slide 15 Right of Access and Correction PHIPA Expands and Codifies the Common- Law Right of Access  Right of access to all records of personal health information about the individual in the custody or control of any health information custodian (some exceptions)  Provides right to correct their records of personal health information (some exceptions)

16. www.ipc.on.ca Slide 16 Access  custodian must make the record available or provide a copy, if requested  custodian must respond to request within 30 days, with a possible 30 day extension  custodian must take reasonable steps to be satisfied of the individual’s identity  custodian must offer assistance in reformulating a request that lacks sufficient detail

17. www.ipc.on.ca Slide 17 Expedited Access  custodian must provide expedited access if the individual requests it and provides evidence that the information is needed urgently and the custodian is reasonably able to respond within the requested time frame

18. www.ipc.on.ca Slide 18 How to Correct Records  by striking out the incorrect information in a manner that does not obliterate it or  by labeling the information as incorrect and severing it from the record, while maintaining a link to the record or  if the correction cannot be recorded in the record, the custodian must ensure there is a practical system to inform persons accessing the record that the information is incorrect and where to obtain correct information

19. www.ipc.on.ca Slide 19 Notice of Correction  at the request of the individual, the custodian must give written notice of the requested correction, to the extent reasonably possible, to persons to who the custodian has disclosed the information  exception – if the correction cannot be reasonably expected to have an effect on the ongoing provision of health care or other benefits

20. www.ipc.on.ca Slide 20 Statement of Disagreement  if the custodian refuses a correction request, the individual is entitled to require the custodian to attach to the record a statement of disagreement prepared by the individual  custodian must make reasonable efforts to notify anyone who would have been notified if there was a correction

21. www.ipc.on.ca Slide 21 Oversight and Enforcement  Office of the Information and Privacy Commissioner is the oversight body  IPC may investigate where:  A complaint has been received  Commissioner has reasonable grounds to believe that a person has contravened or is about to contravene the Act  IPC has powers to enter and inspect premises, require access to PHI and compel testimony

22. www.ipc.on.ca Slide 22 Role of IPC under PHIPA  Use of mediation and alternate dispute resolution always stressed  Order-making power used as a last resort  Conducting public and stakeholder education programs: education is key  Comment on an organization’s information practices

23. www.ipc.on.ca Slide 23 Complaint Process  Complaint can be filed based on access or correction decision of a HIC  Complaint can be filed if a person believes the HIC has or is about to contravene the Act or its regulations  Complaint will usually relate to the collection, use or disclosure of personal health information

24. www.ipc.on.ca Slide 24

25. www.ipc.on.ca Slide 25 Public Education Program  Frequently Asked Questions and Answers available on IPC website (including hard copies)  User Guide for Health Information Custodians available on IPC website (including hard copies)  IPC PHIPA publications distributed to Colleges and Associations of the Regulated Health Professions  IPC/MOH brochure for the general public may be placed in reception areas to be distributed to patients

26. www.ipc.on.ca Slide 26 Public Education Program (con’t.)  IPC member of OHA/OMA/IPC/MOH PHIPA tool kit project  IPC/OBA “short notices” working group Developing concise, user-friendly notices and consent forms to serve as effective communication tools  On-going meetings with Regulated Health Professions, the Federation of Health Regulatory Colleges and Associations  IPC PHIPA awareness article distributed to Colleges/Associations for inclusion in their members’ Magazines and Newsletters

27. www.ipc.on.ca Slide 27 Keeping HIC’s Informed  Orders will be public documents and available on our Web site  Summaries of all mediated cases will be available on our website  Relevant data will be regularly made available to the public and health professionals ( e.g. number of complaints, examples of successful mediations, common issues)

28. www.ipc.on.ca Slide 28 “Naming Names”  IPC will be issuing orders and investigation reports and making them public  A two-step process for identifying health custodians will be instituted: Not identifying custodians for a one-year phase-in period After one year, publicly identifying custodians  If identification of custodian would reveal identity of complainant, the option exists of anonymizing order/report.

29. www.ipc.on.ca Slide 29 Stressing the 3 C’s  Consultation Opening lines of communication with health community and HICs  Co-operation Rather than confrontation in resolving complaints  Collaboration Working together to find solutions

30. www.ipc.on.ca How to Contact Us Commissioner Ann Cavoukian Information & Privacy Commissioner/Ontario 2 Bloor Street West, Suite 1400 Toronto, Ontario M4W 1A8 Phone: (416) 326-3333 Web: www.ipc.on.ca E-mail: commissioner@ipc.on.ca