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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References
Abelson, J., Gauvin, F. P. (2004). Engaging citizen: One route to healthcare accountability papers. Canadian Policy Research Networks. http://rcrpp.ca/documents/28104_en.pdf. Access 7 August 2014.
Marshall, D. A., President’s Message. (2013). Giving birth to patient-centered care: Embryonic science of patient engagement needs a catalyst. ISPOR Connections. Vol 19, No 2. http://www.ispor.org/news/articles/ISPORConnections_Vol19No2_MarchApril2013.pdf. Access 7 August 2014.
Marshall, D. A., Wong-Regier, D., Wasylak, T., Marlett, N. (2014) Patients matter—engaging patients as collaborators to improve health care planning, health service delivery and self-care. http://www.ispor.org/meetings/neworleans0513/releasedpresentations/W20_Marshall.pdf. Access 7 August 2014.
Domecq, J. P., Prutzky, G., Elryiah, T., Wong, Z., et al. (2014). Patient engagement in research: A systematic review. BMC Health Services Research, 14, 89.
Alberta Health Services. (2009). Clinical networks: Terms of reference. http://www.albertahealthservices.ca/hp/if-hp-acc-terms-of-ref.pdf. Access 5 August 2014.
Alberta Health Services. (2011). Strategic clinical networks: Development update. http://www.albertahealthservices.ca/hp/if-hp-phys-strategic-clinical-networks-dev-update.pdf. Access 7 August 2014.
Alberta Health Services. (2012). Strategic clinical networks. A primer & working document (August 7, 2012—V5). http://www.albertahealthservices.ca/Strategic%20Clinical%20Networks/ahs-scn-primer.pdf. Access 7 August 2014.
Gallivan, J., Kovacs Burns, K. A., Bellows, M., Eigensehe, C. (2012) The many faces of patient engagement. The Journal of Participatory Medicine, 4, e32.
Gauvin, F. P. (2010). Patient and service user engagement: An environmental scan. Report submitted to the Canadian Health Services Research Foundation.
Staniszewska, S., Denegri, S. (2013) Patient and public involvement in research: Future challenges. Evidence Based Nursing, 16(3), 69.
Devine, E. B., et al. (2013). A model for incorporating patient and stakeholder voices in a learning health care network: Washington State’s Comparative Effectiveness Research Translation Network. Journal of Clinical Epidemiology, 66(8 Suppl), 122–129.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Strategies for qualitative research. New Jersey: Aldine Transaction, Inc. Network.
Charmaz, K. (2006). Constructing grounded theory. Thousand Oaks, CA: Sage.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage.
Glaser, B. G. (2001). The grounded theory perspective: Conceptualization contrasted with description. Mill Valley, CA: Sociology Press.
Glaser, B. G. (2003). The grounded theory perspective II: Description’s remodeling of Grounded Theory methodology. Mill Valley, CA: Sociology Press.
Glaser, B. G. (2005). The grounded theory perspective III: Theoretical coding. Mill Valley, CA: Sociology Press.
Hernandez, C.A. (1991). The lived experience of Type 1 diabetes: Implications for diabetes education. Unpublished doctoral dissertation, University of Toronto, Toronto, Canada.
Bryant, A., & Charmaz, K. (2007). Handbook of grounded theory. London: Sage.
Charmaz, K. (2014). Constructing grounded theory: A practical guide through qualitative analysis (Introducing Qualitative series), 2nd edn. Thousand Oaks, CA: Sage.
Morse, J. M., Stern, P. N., Corbin, J., Bowers, B., Charmaz, K., Clarke, A. E. (2009). Developing grounded theory: The second generation. California: Left Coast Press.
Marlett, N. J., & Emes, C. (2010). Grey Matters: A guide to collaborative research with seniors. Calgary, AB: University of Calgary Press. http://uofcpress.com/?q=books/9781552382516. Access 6 August.
Mays, N., Pope, C. (1995). Qualitative research: Observational methods in health care settings. British Medical Journal, 311, 182.
Corbin, J., Strauss, A. (2007). Basics of qualitative research. Thousand Oaks, CA: Sage.
Charmaz, K. The changing generations. www.sparc.tcd.ie/generations/assets/pdf/KCharmaz. Access 10 August 2014.
Shklarov, S., Wasylak, T., Marlett, N., Marshall, D., Noseworthy, T. (2013). Patients matter: Engaging patients as collaborators to improve osteoarthritis (OA) care in Alberta. Final project report. Submitted to the Canadian Foundation for Healthcare Improvement.www.ucalgary.ca. Access 23 July.
Staniszewska, S., Haywood, K. L., Brett, J., & Tutton, L. (2012). Patient and public involvement in patient-reported outcome measures: Evolution not revolution. Patient, 5(2), 79–87.
Nicklin, J., Cramp, F., Kirwan, J., Urban, M., Hewlett, S. (2010). Collaboration with patients in the design of patient-reported outcome measures: Capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care Research (Hoboken), 62(11), 1552–1558.
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.
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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
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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