Web Conference: Conducting Research without Consent: Privacy and Ethical Considerations

Original Broadcast Date: May 25, 2016

The proper use and linkage of administrative health data can result in comprehensive, cost-effective and multidisciplinary health services research that results in positive impacts on healthcare delivery and health policy as well as the identification of populations at risk. But while the collection of this health data is routinely collected for the administration of healthcare programs, consent from patients for research purposes is at times not obtained. Since this administrative health data contains personal health information, the collection, use, disclosure, retention and destruction of this data is subject to ethical and privacy requirements under varying regulatory regimes.

Join us for this recorded web conference to hear first about two data repositories used for research in Nova Scotia and New Brunswick which highlight how these data repositories address privacy, confidentiality and security risks through  information governance practices that include: safeguards, agreements, policies and their associated procedures, and employee training.

In the second half of the program, the relevant provisions of provincial and territorial health information privacy laws related to secondary use of personal health information for research purposes will be summarized. You'll hear a discussion of the necessary steps required by researchers to demonstrate ethical research conduct involving humans, as well as the challenges research ethics boards face when charged with vetting research proposals. Research ethics boards are often challenged with making objective determinations about research topics and subjects which then give rise to subjective data use implementation that doesn't have guidance under applicable laws.

What you’ll take away:

  • The relevant regulatory requirements for secondary use of personal health information for research purposes, in law, as well as in the Tri-counsel Policy Statement: Ethical Conduct of Research Involving Humans (TCPS2, 2014)
  • The demonstration of an innovative decision-making tool developed for research ethics boards, that's also applicable to the privacy office, researcher or data repository environments. This tool assists with objective determinations of research proposals when subjective opinions about the research or interpretation of applicable privacy laws may impede the review process.

Jannet Ann Leggett, JD, CIPP/C, CIPT, Managing Director, Due Diligence Associates