Health system leaders are right that decisions about care should be “evidence based” – grounded in what we know works to make people healthier and ensure they have a positive experience in their care journey.
But, what counts as “evidence”?
Most people agree that clinical data plays an important role, through population health statistics, academic research on health administration, etc.
Just as important, however, is evidence from people as they work their way through the health system – patients as well as their friends or family caregivers.
Patients and caregivers have unique and important perspectives that help improve services. Their experiences tell us what’s working, what needs to be improved for patients, and how it can be improved. That’s why there’s a growing interest in public involvement or “patient engagement” in healthcare, and a recognition that it leads to better decisions about how to better deliver health services for patients and their families.
I was recently asked to be part of an expert panel discussion on patient engagement, organized by the Canadian Institutes of Health Research (CIHR) and Health Canada. Other panelists were:
- Dr. Robert Cushman, former CEO of the Champlain Local Health Integration Network
- Dr. Andreas Laupacis, Professor, Faculty of Medicine at the University of Toronto
- Robert Leitch, Associate Director in the Marketed Health Products Directorate at Health Canada
- Anne Lyddiatt of the Cochrane Consumer Network
Together with participants, we had an interesting discussion about the myths, realities and challenges of involving the public in healthcare decisions. From the conversation, my two biggest take-aways were that:
- Involving patients leads to better decisions: those that are based on greater sources of evidence, are more patient-centred and are sustainable in the long-term.
- The public can and should be involved in setting direction for health research. Often, their priorities differ from researchers, and focus on areas of highest impact, such as prevention and education.
Ascentum has just finished a large-scale engagement project in Ontario for The Change Foundation about the experiences of seniors with chronic health conditions and their caregivers. This is just one example of how patient engagement is being used to create a more patient-centred healthcare system. The results of this engagement will be released in the upcoming weeks, and when they are we’ll make sure to share them with you here.
- Ellis Westwood -