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The Arthritis Newsletter

Summer 2011

Information You Can Use!

Written by: Nadia Prestley and Colleen Maloney

 

 

In February 2011, we attended the 9th Annual Cochrane Canada Symposium, Early Exposure to Cochrane: Accessible, Credible & Practical. The symposium, hosted by the Canadian Cochrane Centre, brought together researchers, academics, practitioners, healthcare professionals, and consumers. Of great interest to all in attendance was the presentation on The Cochrane Library. The Cochrane Library contains a wealth of research information where one can find reliable, unbiased answers to healthcare questions in the form of systematic reviews (Cochrane Database of Systematic Reviews) that aid in decision-making.

 

As Consumer Advisory Board (CAB) members and volunteer advocates for arthritis research, we are committed to finding resources to help people make informed decisions about their medical treatments; hence, learning about The Cochrane Library was extremely useful. It is a resource that benefits both healthcare consumers and healthcare practitioners. The symposium also offered many other informative presentations and workshops but two of particular interest to consumers were:

 

  •  Making Decisions using Cochrane evidence: A practical tool for patients and their health care providers(presented by Tamara Rader)
  •  Consumer Impact On Arthritis Research (presented by Janet Gunderson)

 

Along with Dr. Allen Lehman, we presented a poster evaluating the effectiveness of using the CARESi model for consumer-researcher partnerships. The CARES model (COLLABORATIONS & ANSWERS through RESPECT, EDUCATION & SUPPORT) offers practical guidelines for health researchers seeking to effectively involve consumers as research partners. As patient participants in scientific research, we feel especially comfortable and effectual when we are respected, supported, and well informed. The CARES poster demonstrates both the researchers and consumers’ perspectives on the effectiveness of this model.

 

Discussing our views with symposium attendees provided valuable feedback; an additional benefit was receiving comments and constructive critiques, for future projects, from industry leaders. Thank you to those who took the time to visit our poster.

 

One of our favourite aspects of the symposium was meeting academics, professionals committed to evidence-based research, and networking with fellow consumers from across Canada.

 

Consumer Marilyn Walsh led an inspirational session about living with ankylosing spondylitis (AS) and the everyday struggles that someone with AS faces. Marilyn is a consumer volunteer with the Ontario Spondylitis Association and a consumer referee for the Cochrane Collaboration. She provided an excellent handout, explaining The Cochrane Collaboration and The Cochrane Library, which she is happy to share with our readers. The need to create this handout was realized when she attended a forum in Toronto. In her own words:

 

Upon attending a national ankylosing spondylitis (AS) forum in Toronto last year, I became aware of how confused and uninformed some AS patients are about their disease and reliable treatments for it. There is a great deal of good information available on the internet but we all know that unfortunately there is a great deal of unreliable information as well. It appeared to me that some people attending the forum were relying on the latter.

This broke my heart because as someone who suffered for 12 years with an undiagnosed case of severe AS, I know how important it is for someone to begin reliable treatment immediately upon diagnosis to avoid spinal complications … There have been great advances in the treatment of AS in recent years but even with earlier diagnosis times and greatly improved medications such as the biologics, patients can still suffer from the effects of AS if they don’t understand the need to comply with proven treatments as soon as they are diagnosed. …

I feel the more reliable the sources the better the outcome …

Marilyn Walsh, Consumer Volunteer
Ontario Spondylitis Association

 

We would like to thank the Canadian Cochrane Centre for sponsoring our attendance, in particular Tamara Radar, Knowledge Translation Specialist and Eileen Vilis, Knowledge Broker for coordinating our involvement. And, we encourage you to visit the website links Marilyn has provided to learn more.

_________________________________

iThe CARES research was conducted in the Fall 2010. Principle Investigator, Allen Lehman; Co-investigators: Colleen Maloney, Gordon Whitehead, and Nadia Prestley.
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