A survey to learn what people think about the use of large data sets for research purposes
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.
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 research using Big Data;
- Preferred modes of receiving more information about Big Data
A team of researchers has developed Canada’s first set of systematic measures for tracking how well or poorly health systems are doing in providing services to people who have inflammatory arthritis (IA), a potentially crippling disease that is on the rise in Canada.
The researchers developed six key measures for gauging access to specialist care and initiation of treatment for people with IA, a disease grouping that includes rheumatoid arthritis, ankylosing spondylitis, juvenile idiopathic arthritis, and psoriatic arthritis. The work is described in March issue of The Journal of Rheumatology.
People who receive early diagnosis and start of treatment have a better chance of responding well and avoiding permanent joint damage from rheumatoid arthritis (RA), the most common form of IA. There is a growing body of evidence that early detection and treatment are also crucial to good outcomes for people who have other types of IA. Continue reading
Exploring Patient-Centered Care in Inflammatory Arthritis
A research team at the University of British Columbia is exploring experiences of people who have inflammatory arthritis dealing with their healthcare team. A healthcare team may include healthcare professionals, loved ones, and other caregivers.
The team is looking for patients who are:
- age 18 years or older
- live within the Greater Vancouver area
- can understand and speak English
- have been diagnosed with inflammatory arthritis (rheumatoid arthritis, ankylosing spondylitis and other spondyloarthropathies, reactive arthritis, psoriatic arthritis, gout and pseudo-gout, lupus, connective tissue disorders)
- have been diagnosed within the last two and a half (2.5) years
September is Arthritis Awareness Month in Canada. In this issue of JointHealth™ monthly, Arthritis Consumer Experts (ACE) looks at Models of Care for Inflammatory Arthritis to improve the way healthcare is delivered to patients by the health policy decision makers, rheumatologists, allied health professionals and other health care providers who care for them.
Below are highlights from this month’s newsletter:
- What is an inflammatory arthritis model of care
- The foundation of modernizing IA care in Canada
- The role of IA patients in the development of a pan-Canadian approach to inflammatory arthritis models of care
- Models of care infographic