“Part of the Team”: Mapping the outcomes of training patients for new roles in health research and planning

Abstract

Background: A patient research internship (Patient and Community Engagement Research program—PaCER) was created to support a provincial commitment by Alberta Health Services’ Strategic Clinical Networks™ to find new ways to engage patients in a new interdisciplinary organization to support evidence-informed improvements in clinical outcomes across the health system. Objective: Implement and test a new research method and training curriculum to build patient capacity for engagement in health through peer-to-peer research. Design: Programme evaluation using Outcome Mapping and the grounded theory method. Setting and Participants: Twenty-one patients with various chronic conditions completed one year of training in adapted qualitative research methods, including an internship where they designed and conducted five peer-to-peer inquiries into a range of health experiences. Main Outcome Measures: Outcomes were continually monitored and evaluated using an Outcome Mapping framework, in combination with grounded theory analysis, based on data from focus groups, observation, documentation review and semi-structured interviews (21 patient researchers, 15 professional collaborators). Results: Key stakeholders indicated the increased capacity of patients to engage in health-care research and planning, and the introduction and acceptance of new, collaborative roles for patients in health research. The uptake of new patient roles in health-care planning began to impact attitudes and practices. Conclusions: Patient researchers become “part of the team” through cultural and relationship changes that occur in two convergent directions: (i) building the capacity of patients to engage confidently in a dialogue with clinicians and decision makers, and (ii) increasing the readiness for patient engagement uptake within targeted organizations.