SCI research participants’ views on data sharing survey

Researcher(s): Dr. John Kramer

Researchers in Dr. John Kramer’s lab are investigating how individuals with SCI feel about researchers using their data. Specifically, we want to learn how you feel about data sharing.

Data sharing is when the data collected in one research study is anonymously shared with others. Meaning that a researcher allows others to see and use an individual’s data, after deleting any information that could identify the individual (name/birthdate). Medical information is provided in full. As it is your information that would be shared (anonymously), we are very interested to find out your opinions on data sharing.

This study involves filling out an online questionnaire that asks about your health and SCI status, for your opinion on the potential benefits and risks of data sharing, your preferences regarding informed consent and privacy protection, and your level of trust in researchers and others. We are collecting information about you, your health, and your injury to find out about the characteristics of the people who took this survey.

Why should you participate in this study?

Through this anonymous survey, you are able to add your voice to the debate around data sharing in the SCI community.

You may be able to participate in this study if you:

  • have a SCI
  • live in Canada or the United States

Time commitment

Total time commitment is approximately 30 minutes

Compensation for participation

Participants who complete the survey can also opt to receive a $10 CAD gift card.

Where will the study take place?

Remotely (online survey/mail in survey/phone survey). The survey is available in English, Spanish, or French upon request.

For more information or to sign up to participate, please contact Dr. Freda Warner by email  and include “SCI Data Share” in the subject line of your email in order to receive a secure survey link. In the email, please confirm that you have an SCI. If you prefer, you can also call Dr. Warner at 1-778-814-1401 to complete the survey by telephone.