Nicole Prestley, Research Coordinator, WHRI
On September 19, 2013, I had the honour of attending my first Cochrane Colloquium, which was held in Quebec City. The Colloquium was sponsored by the Cochrane Collaboration, a global organization dedicated to the systematic evaluation and production of evidence-based information. Cochrane is widely known for their systematic reviews and corresponding summaries (http://summaries.cochrane.org/).
This year the Cochrane Collaboration celebrated their 20th Anniversary with a colloquium focused on “Better Knowledge for Better Health”. Each day began with a provocative plenary session where the speakers celebrated Cochrane’s accomplishments and challenged Cochrane’s plan and priorities for their next 20 years. Through my five-day journey three common themes emerged, 1) open-access to evidence-based information, 2) evidence-informed health policy and 3) patient involvement in the research process.
One talk during the “Knowledge Users’ Perspective” plenary session on September 21st truly resonated with me, “The Intersection Between Evidence-Based and Patient-Centered Healthcare”. The speaker was Lorraine Johnson, a member of the Patient-Centered Outcomes Research Institute (PCORI), the Chief Executive Officer of LymeDisease.org and a Co-Chair of the US Cochrane Center’s Consumers United for Evidence-Based Healthcare (CUE).
Lorraine’s talk was focused on CUE and their role in facilitating patient involvement in Cochrane research with the belief that “patient engagement is a skill, not a trait”. Through CUE, patients can embark on a training program to familiarize themselves with the research process, language and culture. According to Lorraine, the research culture will dictate the meaningfulness of patient engagement. Changing research culture can make the difference between patient engagement and meaningful patient engagement. In discussing culture, she used the analogy of water in a fish tank: culture is necessary, culture is everywhere and culture is almost invisible. So how does she see the research culture changing to create meaningful patient engagement?
- The degree to which participants are representative of the affected public;
- The degree to which citizens are involved early enough to affect the decision; and
- The amount of influence on the decision that citizens can actually have influence on decision.
Patient engagement helps ensure that research focuses on improving patient outcomes by being demand based rather than supply based. In this meaningful engagement learning is bidirectional where patients are involved from study design to knowledge translation (perhaps in the form of a decision aid). It is a process in information sharing. Patients should be involved in protocol development, reviews and lay summaries, decision aids.
My conviction for meaningful patient engagement in research comes from my mother. After many years of battling with family doctors looking for answers and eventually being forced into retirement due to her pain, she received a diagnosis of Rheumatoid Arthritis, in 2003. Shortly thereafter I was hired at the Arthritis Research Centre of Canada, which has an internal Consumer Advisory Board: a board of patient advocates who collaborate with ARC’s Researchers. The patient group contributes to study design, write letters of support for funding opportunities and disseminate research to the patient community. In 2008 my mom joined this patient group and I saw, first hand, not only the benefits of patient involvement for the researcher, but for the patient. Being a part of this patient group connected her with others in similar situations and gave her a landscape of the type of research being done–research which could directly improve her quality of care and help others attain a diagnosis earlier.
Cochrane has consistently been dedicated to patient engagement in research; my hope is that researchers outside of Cochrane follow suit. We can start building the bridge to the end user of any health research by involving a patient. It takes a strong organization to host a conference and invite speakers to critique its current status and challenge its priorities for the future; Cochrane did it with poise and grace. Cheers Cochrane, to your next 20 years!
For your own Cochrane Colloquium experience of the Plenary Sessions (including Lorraine Johnson’s talk): http://colloquium.cochrane.org/plenary-videos