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

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.