eResearch: Ethics, Privacy & Security
This website was created to outline the ethical dimensions of conducting research involving humans on the internet. Conducting health research on internet discussion groups, chat rooms or other forms of social media requires three main considerations: 1) respect for the confidentiality or privacy of participants 2) awareness of the use or potential use of personal health information 3) measures taken to ensure security of data collected. All three thoughtfully undertaken together would constitute ethical research.
COACH - Canada's Health Informatics Association
I volunteered with COACH as part of an Expert Panel on the Privacy and Security of Personal Health Information on Patient Portals. The Special Edition guideline the group will produce will be published and used nationally and internationally. Apparently it will be widely implemented by eHealth Ontario, in addition to their previous guideline on Privacy and Security. More information can be found on their website: Here
Chart Review Tutorial
So, to prove that I have web design experience, here is a tutorial I designed, programmed, wrote content for, and continue to maintain (from time to time). I would like everyone to take this tutorial because it will help to contextualize Personal Health Information in the context of research, with all the privacy laws and ethics principles that go along with that:
Research Ethics and the Internet
There is a new book called Research Ethics and the Internet which is about how the TCPS is used to interpret online research. The problem is that the first editoin of the TCPS does not even mention the internet. It was publish in 1998 but click the Read More link to learn how the revised Second Edition has intergrated new guidelines on Internet Research
Other Guidelines for Internet Research
Between the time the first edition TCPS was silent on Internet Research and the second edition slated for publication in Fall 2010, there were many organizations that came forward with policies and guidelines for conducting ethical research on the net.
Agenda for Seminar March 25
- Quizz (Ice Breaker)
- Powerpoint Presentation
- Eysenbach Article for Discussion
- Case Scenario
- Questions and Discussion
Relevant Links
The Ethics Guidelines
The Tri-Council Policy Statement is the main guideline for ethics in human research in Canada TCPS