caa a22 4500 606180257 CHVBK 20210128100805.0 cr unu---uuuuu 210128e20150501xx s 000 0 eng 10.1007/s11136-014-0845-y doi (NATIONALLICENCE)springer-10.1007/s11136-014-0845-y Building new roles and relationships in research: a model of patient engagement research [Elektronische Daten] [Nancy Marlett, Svetlana Shklarov, Deborah Marshall, Maria Santana, Tracy Wasylak] Purpose: Patient engagement is influenced by institutional ideologies, professional attitudes and patient readiness to accept new, engaged roles. This article provides an opportunity to consider a new role for patients who are trained to conduct patient experience research using qualitative methods. Methods: The emergence of the role of patient engagement researcher was studied using a grounded theory with 21 patients over one-year internship and 125 research participants. Data were collected using tape recordings, field notes and student assignments. These were analyzed using open and selective coding, memoing, categorizing themes. Results: Patients' education level (from high school to PhD), cultural background (immigrant experience, seniors), employment (employed full or part time, receiving disability benefits or retired), age (late 30s—75) and gender (17 women and four men) were diverse. Main categories (emancipating patient experience; qualifying for research; leading sitting down; working data together; seeding change) are organized by the dialectic of co-creation as the roles of patient and researcher merge. A theoretical model is proposed. Discussion: The theoretical model provides a glimpse into the process of merging two distinct roles of patient and researcher and in the process unleashes a force for change. Conclusions: The emergence of a dialectic from polar opposite roles is difficult to locate in health or other institutions where power differentials exist but there are indications that this new role might become a template for other merged roles in patient-led medical teams. Springer International Publishing Switzerland, 2014 Patient engagement nationallicence Patient engagement research nationallicence User-led research nationallicence Emerging roles for patients in health care nationallicence Health care reform nationallicence Marlett Nancy Community Rehabilitation and Disability Studies, Cummings School of Medicine, University of Calgary, Floor 3, TRW Building, 3280 Hospital Drive, NW, Calgary, Canada aut Shklarov Svetlana Patient and Community Engagement Research (PACER), Cummings School of Medicine, University of Calgary, Calgary, Canada aut Marshall Deborah Department of Community Health Sciences, Cummings School of Medicine, University of Calgary, Calgary, Canada aut Santana Maria W21C Research and Innovation Centre, Cummings School of Medicine, University of Calgary, Calgary, Canada aut Wasylak Tracy Strategic Clinical Networks, Alberta Health Services, Edmonton, Canada aut Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1057-1067 0962-9343 24:5<1057 2015 24 11136 https://doi.org/10.1007/s11136-014-0845-y text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-014-0845-y text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Marlett Nancy Community Rehabilitation and Disability Studies, Cummings School of Medicine, University of Calgary, Floor 3, TRW Building, 3280 Hospital Drive, NW, Calgary, Canada aut NATIONALLICENCE 700 1- Shklarov Svetlana Patient and Community Engagement Research (PACER), Cummings School of Medicine, University of Calgary, Calgary, Canada aut NATIONALLICENCE 700 1- Marshall Deborah Department of Community Health Sciences, Cummings School of Medicine, University of Calgary, Calgary, Canada aut NATIONALLICENCE 700 1- Santana Maria W21C Research and Innovation Centre, Cummings School of Medicine, University of Calgary, Calgary, Canada aut NATIONALLICENCE 700 1- Wasylak Tracy Strategic Clinical Networks, Alberta Health Services, Edmonton, Canada aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1057-1067 0962-9343 24:5<1057 2015 24 11136