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Guidelines for the Use of the Electronic Data Base in FERNS (Family Medicine Educational Research Networks for Service) #96-1

Thomas Freeman

April 1996

EXECUTIVE SUMMARY

Rapid advances in information technology make it possible to store and sort massive amounts of personal health care data. In Family Medicine this presents both opportunity and danger. The opportunity lies in being able to undertake research investigations previously impractical due to the relative rarity of some conditions in any individual practice by linking databases from a number of practice sites. Paradoxically the ease of access provided by these electronic databases which make this type of research brings with it increased danger in the form of greater vulnerability to breaches of patient confidentiality and privacy.

In order to derive as much benefit as possible from these technological developments, the Department of Family Medicine of The University of Western Ontario developed guidelines for the use of electronic database in the Family Medicine Educational Research Networks for Service (FERNS). These guidelines were developed with awareness of the existing legislative climate and the expectation that government legislation will eventually be enacted pertaining to electronic data bases in health care. The opportunity to interact with these involved in developing this legislation and with the Assistant Privacy Commissioners of Ontario (Ann Cavoukian) helped us to try to anticipate the requirements of future legislative changes.

The guidelines are organized under the following headings:

  1. Notification and Consent
  2. Confidentiality, Provisions and Practices
  3. Accountability
  4. Provisions for Security of Data
    1. Overall responsibility
    2. Physical security
    3. Electronic security
    4. Access to health information
  5. Ownership and responsibility for oversight of data
  6. Disclosure practices and transfer of data to a central site
  7. Complaints, remedies and sanctions


The history and expected outcomes of the Family Medicine Education and Research Network for Service (FERNS) is described in detail.

The guidelines require informing patients of the uses made of the health care pertinent to their medical care. The ethical issues regarding research on computerized data from the offices of family physicians is dealt with in three parts: