Population-wide health datasets include consented and unconsented data: why both are necessary

Most people are familiar with the idea of giving expressed consent for the collection of their health information or data. For example, consent may be requested when registering for a service or program, or when participating in a research study.  Permission is granted by signing a form, which includes an explanation of how collected data are going to be used.  The data collected in this manner are known as consented data.

There is another type of routine data collection that does not require expressed consent.  These data, known as unconsented data, are collected during our everyday encounters with the health care system (e.g. a doctor’s office visit) and other programs or services (e.g. education) delivered by government or other public institutions.  A lack of transparency about this kind of data collection and use can lead to public distrust and scepticism about data use and those institutions more generally.

As part of a team of researchers who utilize very large datasets to conduct health research, we know that both kinds of data are vitally important, and contribute to painting a much more accurate and complete picture of health status and needs of people in Canada, and health inequities between communities. This article, written by HDRN Canada team members, explains why it’s so important to ensure the public is adequately informed about the use of unconsented data: The public needs to know why health data are used without consent