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Building new roles and relationships in research: a model of patient engagement research

  • Patient Engagement Special Section
  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

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 30 s—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.

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Acknowledgments

We would like to thank Marlyn Gill and Jean Miller, two patient engagement researchers, for reviewing the manuscript. The authors would like to acknowledge the graphic designer involved in the design of Fig. 2. The project “Patients Matter: Engaging Patients as Collaborators to Improve Osteoarthritis (OA) Care in Alberta” (2011–2013) was funded through the Canadian Foundation for Healthcare Improvement in collaboration with the Alberta Health Services.

Author information

Authors and Affiliations

  1. Community Rehabilitation and Disability Studies, Cummings School of Medicine, University of Calgary, Floor 3, TRW Building, 3280 Hospital Drive, NW, Calgary, Canada

    Nancy Marlett

  2. Patient and Community Engagement Research (PACER), Cummings School of Medicine, University of Calgary, Calgary, Canada

    Svetlana Shklarov

  3. Department of Community Health Sciences, Cummings School of Medicine, University of Calgary, Calgary, Canada

    Deborah Marshall

  4. W21C Research and Innovation Centre, Cummings School of Medicine, University of Calgary, Calgary, Canada

    Maria Jose Santana

  5. Strategic Clinical Networks, Alberta Health Services, Edmonton, Canada

    Tracy Wasylak

Authors
  1. Nancy Marlett
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  2. Svetlana Shklarov
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  3. Deborah Marshall
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  4. Maria Jose Santana
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  5. Tracy Wasylak
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Corresponding author

Correspondence to Maria Jose Santana.

Appendices

Appendix 1

Barriers to including patients in health research and goals to overcome these barriers

Barriers to including patients in health research

What would be needed to overcome the barrier

Lack of research evidence on patient/carer views, experiences and preferences

Published articles from a patient perspective in a variety of journals

Patients have poorly defined roles and expectations and lack the background to contribute to the discussions

Patients with demonstrated competence in clearly defined roles with sufficient background to add a patient collective voice to health care discussions

Quality of life measures often don’t reflect issues of most importance to patients

QoL research, led or co led by PERs published and available on line for patients, researchers and health professionals

Low weighting on evidence from patients

PER research must maintain high quality, recognized and used by health researchers, planners and professionals

Appendix 2

Ethics of engagement research

figure a

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Marlett, N., Shklarov, S., Marshall, D. et al. Building new roles and relationships in research: a model of patient engagement research. Qual Life Res 24, 1057–1067 (2015). https://doi.org/10.1007/s11136-014-0845-y

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  • DOI: https://doi.org/10.1007/s11136-014-0845-y

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