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Strengthening the patient role in decision-making

Strengthening the patient role in decision-making

Why this research matters

Treatment for people with inflammatory arthritis increasingly involves multidisciplinary teams with a focus on patient‐centred care and shared decision-making. However, studies show that well-intentioned patient‐centred care and shared decision-making do not guarantee patients' involvement in their healthcare decisions. There is variability in people's desire and ability to participate which may change or fluctuate over time as physical and psychological distress increases or decreases, they learn more about their disease, their disease progresses or stabilizes, or their priorities shift.

What is this research about? 

This was the first research study designed to understand how IA patients influence and navigate their treatment with members of their healthcare network.

Photography of Dr. Laura NimmonWhat did the researchers do? 

Dr. Laura Nimmon examined how IA healthcare teams, including patients, caregivers, and healthcare professionals, negotiate power around the decision-making process, highlighting the challenge for the newly diagnosed patient to manage their care and assert themselves in the decision-making process. Dr. Nimmon and her team observed and interviewed patients and team members to develop an understanding of how teams negotiate power amongst themselves around patient care plans.

What did they find?  

Decision-making about treatment for people with IA often involves teams of healthcare professionals. It can be challenging for patients to assert themselves and negotiate power around decision-making with clinicians. Dr. Nimmon found that patients experienced a loss of identity and control in addition to managing the physical symptoms of IA but had a strong sense of personal responsibility for managing their healthcare. The support of the healthcare team enhanced patients' influence in treatment negotiations. This work highlights the importance of open communication that acknowledges the valuable experience and expertise of people with IA in making treatment decisions.

What is the impact of this research?

Improved shared decision-making may reduce unequal power dynamics between clinicians and patients and enhance patients’ sense of control and identity within the healthcare team.

Photography of Shanon McQuitty
The burden of managing your healthcare team can be so overwhelming when a person is diagnosed with a chronic illness. Patients are entering into a whole new learning curve of navigating our disease and the healthcare system. Dr. Nimmon clearly understands that this added burden exists. This work identifies the importance of communication and a team-based approach that patients desire. "

— Shanon McQuitty, Arthritis Patient Advisory Board

About the researcher 

Dr. Laura Nimmon is an associate professor in the Department of Occupational Science and Occupational Therapy and scientist at the Centre for Health Education Scholarship, Faculty of Medicine, at the University of British Columbia. Her research has been supported in part by an Arthritis Society Young Investigator Operating Grant, awarded in 2015.

Publication citation 

Hartford W, Backman C, Li LC, McKinnon A, Nimmon L. Appropriating power and asserting power on inflammatory arthritis teams: A social network perspective. Health Expect. 2020;23(4):813-824.

Research at the Arthritis Society

Through the trust and support of our donors and partners, the Arthritis Society is Canada’s largest charitable funder of cutting-edge arthritis research, investing over $220 million in research projects since our founding. These projects have led to breakthroughs in the diagnosis, treatment and care of people with arthritis. Visit us at arthritis.ca/research