BC Data Deliberation
Using Data About You for Research: Who, How and When
The power of data lies in their use to make discoveries that can affect and benefit the public. This power is even greater when data of different types and from different sources are combined or linked together. Current rules surrounding the use and the sharing of data were established prior to the explosion of both data and analytic capabilities. The increase in both the opportunity offered by data use but also potential threat of that use creates uncertainty for data access, and uncertainty often leads to long, slow processes.
To help inform the development of revised rules for data access, we are engaging the public in a deliberation about this topic. A public deliberation is a method of public engagement that allows for an in-depth conversation that can result in direct policy recommendations. Although it is similar to focus groups, a deliberation is different in that it is more structured (e.g., specific discussion questions are pre-chosen) and lengthier (e.g., in this case the discussion will involve four full days over two weekends).
The public deliberation was held over two weekends in 2018: April 7-8 and April 21-22. The participants consisted of a random selection of the public across British Columbia in order to reflect the diversity of opinions in the province.
This project is funded by a Canadian Institutes of Health Research grant.