Is ‘Big Data’ a big deal for health care in Canada?

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STUDY TITLE:
Is ‘Big Data’ a big deal for healthcare in Canada? A survey to learn what people think about the use of large data sets for research purposes

LEAD RESEARCHER:
Dr. Linda Li; Professor, Department of Physical Therapy, University of British Columbia; Senior Research Scientist, Arthritis Research Canada.

Phone: (604) 207 4020
Email: lli@arthritisresearch.ca

PURPOSE OF THIS STUDY:
Big Data, in health care, is large and complex sets of data that have information routinely collected on patients’ health and their use of health care systems, such as their reason for visiting a hospital, laboratory results, reason for visiting a doctor or hospital, and medication prescribed.

The purpose of this study is to understand the public’s knowledge and opinions about the use of Big Data in Canadian health research.
This includes:

  • Current level of knowledge about Big Data
  • Willingness to participate in projects using Big Data
  • Major concerns about the use of Big Data
  • Interest in learning more about health research using Big Data
  • Preferred modes of receiving more information about Big Data
RISKS AND BENEFITS:
This study is considered Minimal Risk. All data will remain in Canada, and you do not have to provide any personal information, and there are no known risks anticipated from completing the survey. Your identity will not be linked with your data, and your survey is anonymous. Only the research team will have access to all data collected in the study. All members of the research team have experience and/or training in data security and research ethics, and will follow the UBC guidelines on data confidentiality. Data used in this analysis will be kept on a secure password protected server or locked filing cabinet at Arthritis Research Canada.

You will not be compensated for your time or receive any other direct benefits. However, this survey is designed to be educational, and you will have the opportunity to learn more about Big Data as you complete the survey.

Participation is voluntary and you can choose to withdraw from the study at any point without penalty. You do not have to answer any questions you do not feel comfortable answering.

By completing the questionnaire, you are consenting to participate in this research.

If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or if long distance e-mail RSIL@ors.ubc.ca or call toll free 1-877-822-8598.