Health Canada's Non-Insured Health Benefits Program

Overview

In the summer of 2003 the OPC received several hundred complaints, as well as numerous inquiries, about Health Canada's decision to require First Nations and Inuit recipients of certain government-funded health benefits to sign a consent form endorsing the department's practices with regard to the collection, use, and disclosure of their personal information. The complainants objected to the complex language of the form, its broad scope, and the lack of adequate measures to protect personal information held by third-party service providers.

Several aboriginal associations, including the Assembly of First Nations and the Inuit Tapiriit Kanatami, supported the complaints and made representations on behalf of their membership.

The impetus for the campaign was a recommendation from the Auditor General that Health Canada improve its tracking mechanisms to prevent the misuse of prescribed drugs. Health Canada also worked to respect the right of benefit recipients to be fully informed about the possible consequences of a drug utilization review.

The complainants felt that the program benefits were and had always been a matter of treaty rights, and that they had no real choice but to agree to review practices that Health Canada was now planning to impose or lose their benefit coverage. They objected to the complex language of the form, its broad scope, and the lack of adequate measures to protect personal information held by third-party providers.

Actions taken by the OPC

We accepted the complaints under the provisions of the Privacy Act, and subsequently determined that there was no infringement of a provision of that Act. However, our Office continued to work with the aboriginal associations and the department to craft a new approach to the consent initiative that would address privacy concerns. We jointly identified the critical points in the health benefits program requiring fully informed consent of recipients. In addition, we agreed that the privacy provisions of the contracts with third-party providers needed to be strengthened, and Health Canada committed to do so. We also agreed the language of the consent forms needed to be as simple and clear as possible.

Outcome of OPC Actions

Health Canada subsequently proposed an alternative approach to the consent initiative, one that has been supported by aboriginal stakeholders. The approach is as follows:

• the department will continue to promote consent as a matter of best practice (a position that our Office endorses), but will no longer require that everyone sign a form;
• it will implement a mechanism to obtain the express consent of benefit recipients where there are patient safety issues or concerns that the program is being used inappropriately;
• it has established a Health Canada/ First Nations Drug Utilization Review Committee, composed of licensed health care professionals, experts in drug use evaluation, Aboriginal health issues and drug utilization;
• it is developing a Privacy Code that sets out the program's collection, use and disclosure practices. The Code meets the higher standard of consent embedded in the Personal Information Protection and Electronic Documents Act, as many of the third-party providers associated with Health Canada's program are subject to that Act.

Our Office has offered continuing support to achieve an appropriate balance between the privacy interests of benefit recipients, and the program imperatives of Health Canada.