What is Cochrane and Why Am I Blogging About It?

The Cochrane Collaboration is an independent, non-profit and non-governmental organization. They have 31,000 volunteers around the world working on organizing medical research information in a systematic way so that patients, policy makers, professionals and others can easily make logical choices about health and healthcare based on the evidence.

Cochrane Canada’s funding runs out in September 2015 and will not be renewed by our government through the Canadian Institutes of Health Research (CIHR). In 2013 CIHR awarded Cochrane Canada the prestigious CIHR Knowledge Translation Award, for “Leadership in promoting evidence-based health care”.

Even in their letter of funding termination, CIHR refers to Cochrane as a “vibrant organization, internationally-recognized for its excellence, and committed to engaging patients in its important work;” and they note the value of their “knowledge translation activities and the quality of [the] synthesis products.

    Cochrane produces systematic review which are used by everyone - from consumers to scientists to policy makers, because they sum up the research evidence on a specific question about the effectiveness of a healthcare treatment or test. 

Since 2005 Cochrane Canada has been funded primarily by the Canadian Institutes of Health Research (CIHR) ($9.6 million over five years) and the Ontario Ministry of Health and Long-Term Care ($1.25 million).  

As you see Ontario has had a part to play in funding Cochrane, and in view of the fact that Cochrane Canada has trained almost 3,000 people in Canada to do systematic reviews, and has held 181 knowledge translation workshops & presentations, they are a mostly untapped resource to help facilitate the transformation of consumers to engaged patients.

Ontario Health Minister Eric Hoskins made this point in his "Patients First: Action Plan for Healthcare" in February this year: 

"Inform: Support people and patients – providing the education, information and transparency they need to make the right decisions about their health."

What better support for patients (the blockbuster drug of this century) than Cochrane reviews and workshops which are part of the foundation of evidence based medicine?

I am hoping that as part of the effort to keep Cochrane Canada here the Provincial Governments would help with funding. Hopefully after the next election we can look for all-party collaboration federally to keep this valuable resource in our country. 

Decision making is getting more and more complicated - we need all the help we can get to make better sense out of it, so it would be a sad loss to the international community of support and to Canada if our country no longer supported Cochrane.

If everyone wrote to their provincial and federal representatives and candidates that would help to get funding for Cochrane back on the radar.

We could also tweet and email our provincial Ministers of Health, and start talking to all of our candidates running in the upcoming federal election. 

What do you want researchers to find out for you?

I've heard a lot of talk this past year about patients being more involved in research and in decision making. People in high places are talking about including the patient voice, from Ontario's Health Minister Eric Hoskins on Thursday at Health Quality Transformation 2014, to the Canadian Foundation for Healthcare Improvement (CFHI).

Minister Eric Hoskins said the first priority is to create and grow a patient centered health system. CFHI (Canadian Foundation for Health Improvement) says they are "Putting Patients at the Centre of Care" and they are behind the Strategy for Patient-Oriented Research (SPOR) which has big research projects coming up. These indicators sound as though the patient rallying cry of "Nothing about me without me" has been heard.

This does not guarantee success - there are many forces that want to see their own vision of participatory medicine, some because of profit, some who like the status quo, and others who resist change.

I was involved in a tweet chat this weekend with The Arthritis Research Centre and their Patient Advisory Board. This organization and their researchers have found ways to include patients and their views throughout the research process. ROAR stands for Reaching Out with Arthritis Research.

The event featured researchers speaking about their new projects to an audience that included anyone who wanted to listen to the live webinar or be in the in-person audience. That's a big change from the usual way we hear about and use research in our own lives.

They want to know what the audience wants to see and hear at the next eROAR event. So I take that to be an open question. Let them know what you want to hear about.

Let them hear what you want to see studied.

They'll have to use those ideas to get grants to do the research so it may be a long shot but I'm betting you all have at least two questions that you want answered.

What questions do you have that you think are being missed and neglected in your health area?
Do you ever look at research papers and wonder who on earth would have picked ____ as a research topic? I have been saving some doozies that I just won't post and let them see the light of day.

I'll forward all responses from comments to the Arthritis Research Centre, or you can send them direct at their website. It doesn't matter what country you're in. You know researchers - they all share. Your ideas won't go to waste.

ARC researchers, bloggers, and Arthritis Society representative

If you are interested in a definition of Patient Centered Healthcare I have linked to a paper by Donald Berwick that has a good discussion of the concept.