If you do not want your personal health information being disclosed to a HIB, it appears that the simplest way is to tell your doctor in writing. While this will not ensure that all your health information in the system will remain confidential, it will protect the information that comes from your doctor’s medical record. 

It is not known how prescription information can be protected from disclosure in e-Health. Currently you can protect your PharmaNet file with a keyword, but cannot opt-out of the records system. When PharmaNet is incorporated into e-Health, we don’t know if the key word system will still operate or some other means of disclosure directive will be available.

Research

The e-Health Act includes detailed sections for how and when personal health information can be disclosed for a research purpose and provides for the creation of a data stewardship committee to oversee the disclosure of personal health information from a health information bank for a planning or research purpose. The data stewardship committee is solely responsible for managing the disclosure of personal health information contained in a health information bank or a ministry database, when the disclosure is for a planning or research purpose. Recently the Province completed its appointments to the data stewardship committee. It consists of twelve people, with representatives from the College of Physicians and Surgeons of BC, the colleges of pharmacists and of nursing, representatives of the Ministry and of health authorities, a health researcher and three members of the general public.     

Disclosure of personal health information from a HIB for research purposes can only be done if the disclosure is authorized under the terms of the designation order and certain other requirements are met, including:

  1. the health research cannot reasonably be accomplished without the personal health information;
  2. it will not be used to contact individuals to ask them to participate in the research unless the Information and Privacy Commissioner approves;
  3. if the research involves record linkage (linking records from different sources to find out new information about individuals) the linkage is not harmful to the individual and is clearly in the public interest;
  4. the data stewardship committee has to impose conditions relating to security and confidentiality and the removal of individual identifiers at the earliest reasonable time (to render the information de-identified or anonymous); and
  5. the personal health information cannot be subsequently used or disclosed without the express authorization of the data stewardship committee. 

Depending on the type of information and whether the HIB includes the right to use disclosure directives, you may have a right to limit how your information will be used for research. However, if the information is de-identified you will not have the same rights, because it is no longer personal health information, since it does not identify an individual.  

Given the amount of research done in the province of BC (we have three major research universities plus many smaller institutions) and the desire of researchers to use personal health information in the research, critics have questioned whether one committee of twelve people will have sufficient capacity to address the number of requests it may receive.     

Access

The e-Health Act gives individuals a right of access to their information held in a health information database except this part of the law is not in force. It is not known when, if ever, the access provisions of the law will be in force.