The Right to be Involved

Health care is becoming increasingly centered on the treatment decisions of patients. While this is an important advance in health care, there can be unintended drawbacks to this approach.

McMaster Researcher


Sinding, C., Aronson, J., McGillicuddy, P., & Ford, A. R. (2011). The right to be involved: contexts and contradictions. Canadian Social Work Review, 69-88.

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What is this research about?

Patient involvement in health care decisions is widely considered an improvement on past practices where health care providers primarily made treatment decisions. In current medical practice, patients are given information and resources to make informed choices. However, for some patients this is perceived as a burden that negatively impacts their experience in the health care system. This research examines the work that breast cancer patients have to do in order to get treatment in the present-day health care system and how shifts in what is expected from patients can be explained by changing social trends.

What did the researchers do?

The researchers used institutional ethnography as a method of inquiry to examine the experiences of women with breast cancer using qualitative data from a study that took place in Ontario, Canada. The implications of these findings for social workers are considered.

What did the researchers find?

Women in the study alluded to the fact that they felt overwhelmed by all the treatment information presented to them and reported feeling pressure caused by the expectation that they needed to be involved in, or responsible for, their health care. Despite the fact that the health sciences literature recognizes that not all patients want to be involved in their health care decision-making, health care professionals are encouraged to intervene and attempt to “empower” their patients to be more involved. Patients’ lack of involvement is viewed as a condition that needs to be corrected.
An unexpected result of this emphasis on patient involvement is that health care providers are now reluctant to provide patients with substantial direction or guidance. Patients work hard to secure an opinion from their health care providers as to which treatment option would be the optimal choice for them. Patients are also now expected to monitor, coordinate, and advocate for their own care. This indicates that patient involvement is becoming a requirement of good health care rather than a choice.
The researchers trace these shifts in expectations of patients and providers to large-scale social changes and an infusion of business-oriented values into state policy. Users of welfare services, such as health care, have been transformed from clients or patients into consumers. 

How can you use this research?

Social workers and health care professionals can use this research to gain a better understanding of how current practices of patient involvement can be an impediment to receiving optimal health care for some individuals.

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