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

Quality of Life Research

Volumn 24, Issue 5, 2015, Pages 1057-1067

  Marlett, Nancy ^a   Shklarov, Svetlana ^a   Marshall, Deborah ^a   Santana, Maria Jose ^a   Wasylak, Tracy ^b  

^a UNIVERSITY OF CALGARY   (Canada)

^b ALBERTA HEALTH SERVICES   (Canada)

Author keywords

Emerging roles for patients in health care; Health care reform; Patient engagement; Patient engagement research; User led research

Indexed keywords

ADULT; AGED; ATTITUDE; FEMALE; HUMAN; INFORMATION PROCESSING; MALE; MEDICAL RESEARCH; METHODOLOGY; MIDDLE AGED; PATIENT PARTICIPATION; QUALITY OF LIFE; STUDENT;

ADULT; AGED; ATTITUDE; BIOMEDICAL RESEARCH; DATA COLLECTION; FEMALE; HUMANS; MALE; MIDDLE AGED; PATIENT PARTICIPATION; QUALITY OF LIFE; RESEARCH DESIGN; STUDENTS;

EID: 84938053346     PISSN: 09629343     EISSN: 15732649     Source Type: Journal    
DOI: 10.1007/s11136-014-0845-y     Document Type: Article

References (28)

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. Gallivan, J., Kovacs Burns, K. A., Bellows, M., Eigensehe, C. (2012) The many faces of patient engagement. The Journal of Participatory Medicine, 4, e32.
9. Gauvin, F. P. (2010). Patient and service user engagement: An environmental scan. Report submitted to the Canadian Health Services Research Foundation.
10. Staniszewska, S., Denegri, S. (2013) Patient and public involvement in research: Future challenges. Evidence Based Nursing, 16(3), 69.
11. 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.
12. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Strategies for qualitative research. New Jersey: Aldine Transaction, Inc. Network.
13. Charmaz, K. (2006). Constructing grounded theory. Thousand Oaks, CA: Sage.
14. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage.
15. Glaser, B. G. (2001). The grounded theory perspective: Conceptualization contrasted with description. Mill Valley, CA: Sociology Press.
16. Glaser, B. G. (2003). The grounded theory perspective II: Description’s remodeling of Grounded Theory methodology. Mill Valley, CA: Sociology Press.
17. Glaser, B. G. (2005). The grounded theory perspective III: Theoretical coding. Mill Valley, CA: Sociology Press.
18. Hernandez, C.A. (1991). The lived experience of Type 1 diabetes: Implications for diabetes education. Unpublished doctoral dissertation, University of Toronto, Toronto, Canada.
19. Bryant, A., & Charmaz, K. (2007). Handbook of grounded theory. London: Sage.
20. Charmaz, K. (2014). Constructing grounded theory: A practical guide through qualitative analysis (Introducing Qualitative series), 2nd edn. Thousand Oaks, CA: Sage.
21. 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.
22. 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.
23. Mays, N., Pope, C. (1995). Qualitative research: Observational methods in health care settings. British Medical Journal,311, 182.
24. Corbin, J., Strauss, A. (2007). Basics of qualitative research. Thousand Oaks, CA: Sage.
25. Charmaz, K. The changing generations. www.sparc.tcd.ie/generations/assets/pdf/KCharmaz. Access 10 August 2014.
26. 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.
27. 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.
28. 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.