Consent to Research

In line with UHN's goal of focusing on big data and maximizing research output, the best way is to be able to tap into anonymized patient records. That's not the only step we need to take though. Abiding by TCPS2 policies, we need to obtain patients' consent to access their medical records. The simplest way to do that? A checkbox.

On every patient clinic intake form, requisition, survey, include the following checkbox items:

1) I agree to allow researchers at the UHN and their collaborators to use anonymized versions (all identifiable information removed) of my medical records for the purposes of conducting research to improve medical care.

2) I agree to be contacted by researchers at the UHN for any upcoming research studies.

This information should be entered into EPR, allowing a way to screen all patients to see whose medical records can be used for research and who can be a potential researcher participant. This mechanism will accelerate the research being done at UHN. (Currently, poster advertisement for studies is a very slow recruitment mechanism).

As a step of accountability, a UHN-wide database of research studies will be useful - a means of seeing what studies a participant is enrolled in - because one of the ethical principles is to ensure researchers are not taking advantage of a participant's low economic status (ie. they participate not completely of their own will - but because of the potential financial gain).

Comments

Thank you for your question.

It is certainly an aspirational goal at UHN to work towards keeping research and clinical record keeping side by side—it is definitely one of the major goals of the integrated IT digital hospital system that is in planning. We don’t yet know how we will accomplish this, and there are many privacy concerns that we need to consider very carefully.

Christopher Paige, EVP Science and Research