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. Linking data, however, also can introduce risks, such as the potential to identify certain sub-populations or communities. 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.
Current practices surrounding the use and the sharing of data were established prior to the explosion of both data and analytic capabilities. To help inform the development of practices around the use, access, and application of data for research purposes, we engaged the public in two deliberation events 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 a focus group, 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 each event involved four full days over two weekends).
No prior knowledge of the topic was necessary in order to participate. Between 25 and 30 randomly selected adults from across British Columbia were invited to come together to share their views in two public deliberation events. Participants heard from several experts and key stakeholders with diverse views. Participants also received a plain language information booklet prior to the event to help them prepare for the deliberation.
Participants worked together in small- and large-group formats over the four days at each event, to identify and discuss important issues relevant to the use, access and application of data for research purposes. The goal of each event is for participants to collectively develop policy recommendations that reflect what is important to them about the topic.
This project was funded by a Canadian Institutes of Health Research grant.
Research Data Use in a Digital Society: A Deliberative Public Engagement (2019)
This public deliberation was held over two weekends in 2019.
> download 2019 Public Deliberation Event booklet
> download Summary Report of the 2019 Data Deliberation event (coming soon)
Using Data About You for Research: Who, How and When (2018)
The public deliberation was held over two weekends in 2018.
Discussion and media comment
A recently published paper in the International Journal of Population Data Science summarizes the participant’s recommendations which are grouped into four themes: governance of linked data; the review process and security; researcher and Data Steward responsibilities; and public involvement.
An online article in The Conversation states that data collected by governments can be useful to researchers but only when accessed carefully.