Background: The Strategy for Patient-Oriented Research (SPOR) Evidence Alliance (hereafter, the Alliance) is a pan-Canadian initiative designed to promote evidence-informed healthcare and policy that is grounded in the principles of inclusion, diversity, integrated knowledge translation, co-creation of research, transparency, and reduction of research waste. The Canadian Institutes of Health Research (CIHR) funded the Alliance upon recognizing that a concerted, well-resourced, and collective, patient-oriented approach was needed to increase capacity within the health landscape to synthesize, disseminate and integrate research results more broadly into healthcare decision-making and clinical practice.
Objectives: To provide an overview of the Alliance and demonstrate how stakeholders (eg, patients, policy makers) are meaningfully engaged in all Alliance activities.
Methods: The Alliance is governed by six standing committees to advise on the operation, sustainability, and evaluation of its activities. A key activity of the Alliance is to promote increased use of evidence in health system decision-making by offering a research query service. This service permits stakeholders to submit their health research needs for knowledge synthesis, guidelines, and knowledge translation. An Alliance-affiliated research team then co-produces research findings with input from relevant stakeholders. Collaborative tasks often include creation of the study protocol, and participation in research conduct and dissemination activities.
Results: The Alliance currently includes 250 members who are researchers (60%), trainees (13.2%), policy-makers/healthcare providers (18.4%), and patients (8.4%). Policy-makers/healthcare providers and patients hold 16.4% and 13.7% (respectively) of 73 seats within the governance structure. To date, the Alliance has received 75 queries of which 24 successfully completed queries involved collaboration with 54 knowledge users. The completed queries all addressed a need in knowledge synthesis. Three-quarters of these came from government, 8.0% from another SPOR entity, 8.0% from a guideline developer, 4.0% from a health system manger/care provider, and 4.0% from a multinational health agency. Results from completed queries are anticipated to inform policy or practice by organizations that have a provincial reach (79.2%), national reach (16.7%), or international reach (4.2%).
Conclusions (patient/healthcare consumer involvement): The strength of the Alliance lies in the meaningful engagement of stakeholders (e.g., patients, health system decision-makers) in all activities. Stakeholders provide input into the research agenda and strategic direction of the Alliance, and engage as meaningful partners in the research process. This model of collaboration ensures that efforts to address health research priorities of populations and health systems are appropriately informed and purpose-driven, thereby reducing inefficiencies and waste.