Who we are

Citizen Science is a research project led by Dr. Linda Li at the University of British Columbia. The information that you provide will give valuable insight into the challenges that people experience when living with symptoms such as pain. This information will be used by health scientists to discover new research questions that are targeted at uncovering the challenges, and potentially ways to address them. Your contribution is entirely voluntary and you have the right to stop participating and/or delete your account at any time. We have taken steps to reduce risk and maximize security. No information that could identify you will be used unless required by law.

If you would like to request and receive the information we have collected on you, please contact the research coordinator at citizenscience@arthrtitisresearch.ca or call toll free at 1-844-707-4053

What information do we collect?

Information you provide to us

When you create an account and complete the surveys, we collect and store that data. This information is separated into two categories: 1) personal identifiable information, such as your email address; 2) de-identified information, which includes demographic information (for example, whether you are married) and data shared in response to the surveys.

Information we receive

When you interact with the Citizen Science website, Matomo Analytics, an analytic software, will collect information about your visit. Matomo Analytics is a third-party software that uses cookies that are stored on your browser to create an analysis of how you use the website. The information generated by these cookies, such as your anonymized IP address (that is, a part of the IP address), information from the device (that is, browser type), and frequency of your visits is transmitted through an encrypted network and stored on the secure servers of Population Data BC. The report generated by Matomo Analytics will not include personally identifiable information. For more information, please visit: Matomo Analytics Privacy Policy.

How to opt out of Matomo Analytics

You can manage the cookies that are installed on your browser by adjusting the settings within your browser. Likewise, you may opt out of Matomo Analytics to prevent your usage data from being analyzed by unchecking the box below. This will protect your privacy, but it will also prevent Citizen Science from learning about your actions and creating a better experience for you and other users.

How do we use the information?

Information you provide to us

  1. Personal identifiable information:

    No personal identifiable information will be used for research purposes. Scientists will only have access to de-identifiable information upon request and with authorized approval.

    We adhere to all relevant legislation regarding personal information, including the BC Freedom of Information and Protection of Privacy Act.

  2. De-Identifiable information:

    The data you share with us when completing surveys (content data) will be used to generate future research questions for scientists studying the burden of symptoms such as pain. Scientists can only request access to de-identifiable data that is in alignment with their research interest. Researchers’ access to this data will only be granted upon approval from their Research Ethics Board and research agreement with the Citizen Science team.

Information we receive

The information collected through Matomo Analytics generates reports and analyses about your usage and browsing patterns on the Citizen Science website. With this information, we can improve the functioning of our platform, gain a better understanding of your interactions, and help personalize your user experience.

How do we store the information?

Citizen Science values user confidentiality and is committed to protecting all of your information. The data collected from the Citizen Science website will be stored on the secure servers of Population Data BC. Personal identifiable information, such as your email address, will be separated from the content data and stored separately on a secured server. This means all personal identifiable information and the content data will not be directly linked to one another.

The data will be stored on devices that are encrypted and require two-factor authentication. Only authorized personnel can access the servers, and all access will be tracked and documented. No data will be modified or edited. No research staff or researchers will have access to personal information. Only the authorized personnel at Population Data BC will be able to access this. Only de-identified content data can be accessed by researchers by request.

The data will be backed up regularly by Population Data BC in accordance with their standards. The data collected from the website will be stored indefinitely or until Citizen Science ceases operation, in which case participants will be notified. If Population Data BC suspects a breach of the Research Agreement, Population Data BC will investigate and notify the relevant Data Steward(s).

Changes to our privacy policy

Citizen Science has the right to revise this privacy policy at any time and will notify users of any changes on its website. We will not reduce your rights or make any changes that will compromise your contribution without your consent in accordance with applicable law. Changes related to how we use information provided by the user will be relayed to you through the email address that you provided. Therefore, it is the user’s responsibility to have given accurate and up-to-date contact information or to visit the website regularly to check for any changes. Prior versions of the privacy policies will be kept for your review.

Contact

If you have any questions about this privacy statement or wish to submit a request or inquiry, please email citizenscience@arthrtitisresearch.ca or call toll free at 1-844-707-4053.