In the Cochrane model, patients are experts

Patients are central to the work of Cochrane. This goes back to the founding of the collaboration in 1993, when patients were recruited to the first board of directors. Patients continue their oversight role for the collaboration, and patients are members of Cochrane Canada’s own advisory board. But the contribution of patients goes well beyond governance.

Patient expertise is invaluable when it comes to priority setting. Many Cochrane review groups routinely consult with patients to help them come up with new topics and to determine in what order to tackle them. This is important because patients will identify different knowledge gaps from other stakeholders, such as health practitioners. An example is complementary and alternative medicine. The cost implications of these therapies are enormous for patients, who usually have to pay out-of-pocket.  This research might not be a priority for practitioners, who likely favor mainstream medicine, but patients have an appetite for these alternatives and want to know what science has to say about their effectiveness. It is the same with review updates. Patients have a say in what reviews are updated first and input is sought from sophisticated rounds of consensus with all the stakeholders (as Cochrane Musculoskeletal did for osteoarthritis).

Another major contribution of patients is the selection of outcomes to focus on when analyzing studies for a systematic review. Often the outcomes across studies are too numerous and too varied to synthesize them all, so certain outcomes must be prioritized. As with knowledge gaps and topic prioritization, patients have a unique perspective. They might heavily weight an outcome that doesn’t seem medically significant to a researcher or practitioner but will have a significant impact on the quality of life of a patient. In the Cochrane approach to systematic reviews, patients are one of the experts in the review process.