BC Data Deliberation 2019
Research Data Use in a Digital Society: A Deliberative Public Engagement
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. 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 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 will be held over two weekends in 2019: October 19-20 and November 2-3. No prior knowledge of the topic is necessary to participate. Participants will work together in small- and large-group formats over the 4 days to identify and discuss important issues relevant to the use, access and application of data for research purposes. The goal of the event is for participants to collectively develop policy recommendations that reflect what is important to them about the topic. All participants must be able to attend all 4 days of the deliberation.
Between 25 and 30 randomly selected adults from across British Columbia will be invited to come together to share their views in a public deliberation event. Participants will hear from several experts and key stakeholders with diverse views. Participants will also receive a plain language information booklet prior to the event to help them prepare for the deliberation.
Participants who are selected will receive an honorarium of $125 on the morning of each day of participation, for a total of $500. Transportation and meals will also be provided; if coming from out of town, lodging will be arranged.
If you are a resident of British Columbia and are interested in participating in the deliberation, please complete a short eligibility survey by clicking on the link, below. The survey asks for social and demographic information about you, which only be used to determine your eligibility to participate. Your information will be kept confidential and only the study team will access your information. It takes 10-15 minutes to complete the survey. The goal of the research team is to ensure that a diversity of experiences and social perspectives is represented at the event. The survey will close on September 6th, 2019.
Your personal information is protected by our privacy law in BC (called the Freedom of Information and Protection of Privacy Act (FIPPA)). For this survey, your identifiable information is collected under section 26 (c) of FIPPA. This study’s ethics ID number with UBC’s Research Ethics Board is H19-01765.
This project is funded by a Canadian Institutes of Health Research grant.