*Please note: This study is no longer recruiting survey participants.*

 

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A sub study of PRECISION: Preventing Complications from Inflammatory Skin, Joint and Bowel Conditions

 

Project Co-Leads for the Big Data sub-project:

Linda Li, BSc, PT, MSc, PhD.
Professor, Department of Physical Therapy, University of British Columbia

Cheryl Koehn
President, Arthritis Consumer Experts

Research Team:

Clayon Hamilton BSc, MSc, PhD, Post-Doctoral Fellow
Natalie McCormick BSc, MSc, PhD
Allan Stordy, CSPA
Kelly English, APAB

 

Study start date: 2016

Study end date: 2019

 

 

What is “Big Data”?

In health care, ‘big data’ are massive and complex data sets which contain information routinely collected on patients’ health and their use of health care systems, such as their reason for visiting a hospital, laboratory results, doctor’s notes, and medication prescribed.

 

Why do research on Big Data?

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 ways of receiving more information about Big Data

What the team can learn from Big Data could improve health policymaking in Canada, and could help patients and providers in making informed health care decisions.

 

What will be done?

To learn more about patients’ and the public’s views about the use of Big Data for health research, patient organizations and researchers in the PRECISION Network launched an online survey to understand patients’ knowledge and opinions about the use of Big Data in Canadian health research. This survey will be promoted through the consumer-patient organizations of the PRECISION network.

 

Who is funding the research?

  • Canadian Institutes of Health Research
  • Crohn’s and Colitis Canada

 

Who is involved?

This survey was designed and administered by the consumer-patient organizations of the PRECISION network, which include:

  • Arthritis Consumer Experts
  • Arthritis Patient Advisory Board of Arthritis Research Canada
  • Canadian Skin Patient Alliance
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