Patients with lived experience share their insight
In the fall, we asked for volunteers to participate in a research study to identify outcomes that patients truly care about following treatment for coronary artery (heart) disease. And you stepped up – thank you to everyone who volunteered!
In addition to patients, family members and caregivers, medical professionals were also invited to participate in the study. All participants answered three short online questionnaires which resulted in 11 outcomes being identified as their biggest concerns. From these 11 outcomes, participants then spent half a day in a lively and engaging consensus-building process, to identify the key 4 – 5 most important outcomes.
This study builds on Dr. Louise Sun’s previous work that explores what ‘success’ means for patients, beyond the traditional medical model of simply surviving the cardiac event. In other words, merely surviving a cardiac emergency isn’t always enough – for many patients, quality of life in the months and years that follow can be as important. Participants identified, for example, severe stroke and ventilator dependence as critical negative outcomes.
There was also an interesting discussion regarding dementia. While the medical professionals around the room clearly noted that dementia was not a direct result of a heart condition, patients, family members and caregivers identified it as being high on their list of negative outcomes. Even though there is no direct link, stress on the body caused by heart disease treatment and hospitalization may contribute towards the progression of dementia, and so it remained an important factor for patients and caregivers. The results of this work are part of a larger study on patient outcomes that will be shared later, so stay tuned for more information.
Building a better understanding of what outcomes matter most to patients and their loved ones helps physicians and surgeons when providing advice to patients. For example, medical professionals can share the likely impacts of different courses of treatment based on the priorities identified in this study, which in turn helps patients to make more informed choices about their options. This research also allows medical interventions to be evaluated differently – making sure that the impacts patients care most about are measured and analyzed now, so that better statistical data is available for future patients.
Dr. Sun is passionate about involving patients in her research. The value of their insights is critical to understanding the impact that medical decisions have on the people who are central to her work – patients. Some of the comments heard after the session:
- “It is really a privilege to be able to contribute to the work of the Heart Institute in this way.”
- “I really felt that my experience as a patient was valued by the Heart Institute.”
These insights were generated thanks to the contributions of our alumni members who volunteered as Patient Partners to share their lived experience with the researchers. If you would like to register to be a Patient Partner, you can do so on the University of Ottawa Heart Institute Patient Partner page.