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Spinal Cord Injury research participants’ views on data sharing

Researcher(s): Dr. John Kramer

Researchers in Dr. John Kramer’s lab are investigating how SCI research participants feel about researchers using their data. Specifically, they are interested in learning more about how SCI research participants feel about data sharing.

Data sharing is when the data collected in one research study is anonymously shared with others. This means that a researcher allows others to see and use the individual data they collected in a research study, after deleting information that could identify people (like your name and exact birthdate). Other medical information is provided in full. As it is your information that would be shared (anonymously), they 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 spinal cord injury 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 regarding your health and injury to find out about the characteristics of the people who took this survey.

To access the survey, please contact jessie.mcdougall[at]ubc[dot]ca, and include “SCI Data Share” in the subject line of your email.

Why should you participate in this study?

A potential benefit to participating in this study is the opportunity to add your voice to the debate around data sharing. We are also offering a 10$ gift card for participation. The surveys are completely anonymous.

You can participate in this study if you have an SCI and have previously taken part in, or are currently participating in a research study (of any kind)!

Time commitment: 1 hour
Compensation for participation: $10 gift card

For more information, please contact the study coordinator, Jessie McDougall, by email, or call (604) 831-7706