Determining the Impact of Patient Advocacy

Marilyn Walsh is a consumer volunteer within the Cochrane Musculoskeletal Group.  She is a regular contributor to reviews as a consumer referee, but this past year she made a much greater impact on awareness of Cochrane throughout her area of interest.

Just over 5 years ago, I was approached by my rheumatologist about becoming involved with a volunteer organization called “Patient Partners in Arthritis”. We are volunteer consumers with different forms of arthritis who are trained to demonstrate a basic musculoskeletal examination and to share our experience of arthritis with medical students, residents and other healthcare professionals. Shortly after becoming a Patient Partner, national Patient Partner trainer , Anne Lyddiatt, a Cochrane Consumer Representative, introduced myself and two of my colleagues to the Cochrane Collaboration and the Musculoskeletal Group. 

Not only had I never heard of the Cochrane Collaboration but I had also never heard of a systematic review or evidence-based medicine.

I recall being very overwhelmed initially but over the next couple of years, I had the opportunity to attend two Canadian symposia and the pieces came together. In an attempt to better educate myself about my condition, I attended a national Canadian Spondylitis Association (CSA) forum in 2010. I wanted to better disseminate information to the healthcare professionals I would encounter as a Patient Partner. Little did I know that it was my work with Cochrane that would now become very useful. 

While at the forum, I became aware of how confused and unknowledgeable some 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 there is also a lot of unreliable information. I could tell that some people attending the forum were relying on misinformation through the questions asked of an expert panel. This broke my heart because as someone who suffered for 12 years with an undiagnosed case of ankylosing spondylitis or AS (an inflammatory form of arthritis which predominantly affects the spine), I know how important it is for someone to begin reliable treatment immediately upon diagnosis to avoid spinal complications. I’m fortunate to have avoided severe kyphosis (permanent forward curvature of the thoracic spine) and fused fairly straight with only upper thoracic and cervical spinal deviations but some people attending the forum were not so lucky.

There have been great advances in the treatment of AS in recent years but even with potentially 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. Even for those hesitant to or unable to take medications, specific exercises and physiotherapy can be of great benefit. There is a Cochrane Review, “Physiotherapy interventions for ankylosing spondylitis” which states that group and supervised exercise are better than home-based exercise, but any intervention is better than none. Exercise, postural training and stretching are the cornerstones of AS treatment. I decided to provide my fellow AS suffers with a reliable source of evidence-based health related information so that they could better understand the thinking behind all aspects of their treatments.

My involvement with the Cochrane Collaboration gave me the means I needed to attempt this.

I had been a silent member of the Canadian Spondylitis Association (CSA) for 15 years, quite happy to receive my quarterly newsletters, but I knew that if I was going to make any kind of difference, I needed to become more involved. I immediately became a local contact and am now a board member of the CSA-Ontario Chapter.  I was able to disseminate Cochrane to a few people locally but I felt that the best way to contact as many people with AS as possible was through the CSA national newsletter. 

After consultation with the Cochrane Musculoskeletal Group, I wrote an article outlining all the information necessary to understand the mission of the Cochrane Collaboration and the benefits and features of the Cochrane Library. This article was accepted for publication for the CSA newsletter and reached over 700 consumers with AS. I was given the opportunity to present this article as well as my motivations for writing it at the Canadian Cochrane Symposium in 2011. While at the symposium, other consumers commented that they liked the fact that the article had been geared to AS. I felt that the mention of their own disease would get people’s attention more than just a generic article about Cochrane.

An editor for the Consumer Advisory Board of Canada’s newsletter later contacted me about printing my article in her publication. It was adapted to suit a general arthritic readership and reached over 200 consumers.

While at the symposium, I discussed an idea I had to expand the promotion of the Cochrane Library to AS organizations outside of Canada. Permission and assistance was obtained from Mary Ellen Schaafsma, Executive Director of the Canadian Cochrane Centre and Tamara Rader, Knowledge Translation Specialist and Trials Search Coordinator of the Cochrane Musculoskeletal Group, also of the Canadian Cochrane Centre. Tamara would become my much needed liaison when dealing with editors who had questions regarding copyright issues, etc. and she would be kept up to date at every stage of the project.

This is where things began to get interesting….

This project began simply as a way of reaching out to consumers who had AS but very early in the project it became obvious that not all countries had an AS specific organization but most did have a national arthritis organization. Because, generally speaking, all forms of arthritis benefit from compliance with proven treatments, my objective broadened. In order to expand outreach possibilities, I would attempt to contact as many English speaking AS/arthritis not-for-profit patient organizations worldwide as possible in the hopes that the Cochrane related articles I would provide them with would be shared with their members via newsletters, magazines or websites. 

An internet search produced 27 organizations (26 national and one international) from 13 different countries. This total includes several national organizations representing other forms of arthritis (rheumatoid arthritis, lupus and fibromyalgia) that surfaced during my search. Each organization was provided with both a longer and shorter version of the article to accommodate different space requirements. Each version was customized to apply to each disease group. Along with the articles, I also included a letter of introduction summarizing my volunteer associations and motivations for embarking on this outreach project.

In total, ten organizations from seven countries responded affirmatively (either publishing the article or expressing interest in doing so) including the Ankylosing Spondylitis International Federation (ASIF).

One of the roles of ASIF is the dissemination of knowledge about AS among its 32 member societies by way of its newsletter. There is no way of knowing which, if any, of the member societies picked up the article for publication but this represents the largest opportunity for the dissemination of knowledge relevant to AS sufferers to go beyond the English speaking world that this project could offer.

This project was presented as a poster at least year’s Madrid Colloquium, where it was noted that only one of three US organizations contacted accepted the article. This is significant because my search revealed that most smaller organizations refer their members to larger sites, most notably the US and UK, followed by Canada, Australia and any international organization. Three disease-specific national organizations in the UK (those representing rheumatoid arthritis, AS and fibromyalgia) had responded but in my opinion, if we wanted to reach as many consumers as possible, we needed to get more US organizations of board.

For this reason, in the spring of this year, I began “Phase 2” of this project. I contacted disease-specific organizations representing different forms of arthritis in Canada, Australia, New Zealand, Ireland and the UK, but I made my main focus the US. In all, I located and contacted 52 organizations. (This number isn’t near as impressive as it sounds because many of these were simply provincial, state or territorial chapters of national organizations. I felt that if I could not reach the national organizations, perhaps I could reach the smaller chapters.) To date, I have received affirmative responses from two territorial chapters in Australia, one provincial organization in Canada and I am most pleased to say that we did manage to gain the support of one more national disease-specific organization in the US, this time for scleroderma.

Of the 15 positively responding organizations, Arthritis Australia was the only one that already mentioned The Cochrane Collaboration on its website. With only one exception, not a single editor had heard of the Cochrane Collaboration and its Library prior the receiving my articles.

If editors for national medically related organizations had never heard of Cochrane, this leads me to believe that the average consumer in these countries hadn’t heard of it either. The printing of these articles potentially provides consumers in these countries with their first introduction to the Cochrane Library as a reliable source of research related information beyond arthritis websites alone.

Although it is impossible to say how many consumers were introduced to the Cochrane Library for the first time through this outreach project will actually follow through and visit the Library site, this project potentially reached tens of thousands of consumers.

I would like to sincerely thank all those who gave me help and encouragement in this undertaking.

When I first entered the world of volunteerism, I marvelled at the involvement of others with conditions similar to my own. I wondered why anyone dealing with physical pain and fatigue on a daily basis would want to voluntarily engage in multiple organizations. I now fully understand. One role feeds or supports the other and the gratification patient advocacy gives is immeasurable.