Healthcare is a system based on education and expertise. As healthcare providers, we’re taught to value research, education and the expertise of physicians and specialists. We think about the patient as being in need of care and guidance. What we don’t think about as often is how patients and clients can guide us if we invite them to partner in their own treatment.
There are many ways to include the lived experience of patients and clients in care plans, treatments, and medical research in order to offer a new perspective that has the potential to break new ground in how particular conditions or illnesses are treated. Here are three major examples:
A patient or client looking to help find a solution to their suffering or improve the landscape for future patients and clients at times has the benefit of limited medical knowledge. This allows them to look at symptoms from a different lens.
Patients and clients likely don’t have the same biases a medical professional gains from their education or practical experience. They may be less likely to jump to the most likely conclusions or label symptoms in a particular way and more likely to ask questions about what’s happening to them and why.
There’s no denying healthcare providers have enough on their plates and the systems we work within are not always smooth and up-to-date. The act of sending a patient back and forth between specialists is not typically timely and can be redundant.
The good news is that there is one person who knows exactly what each specialist has said and done without needing to dig through medical records and files—the patient/client themselves. Using their stake in the matter, passion for solving the problems facing their health and their lived experience can go a long way in driving top down administrative/bureaucratic change.
Once a patient or client leaves our care or is no longer in need of regular intervention or treatment — you sometimes wonder after them. How is it going?
While it is a success that there are no longer life-threatening or debilitating problems, many patients and clients—especially those with uncommon conditions—still live with perplexing and unpleasant long-term effects which the Canadian healthcare system doesn’t have the process or capacity to properly track.
Focusing on lived experience can give voice to patients and clients who continue to deal with symptoms the current healthcare system doesn’t understand.
In a recent episode of our Central Line: Leadership in Healthcare podcast, TallTrees co-founder Leah Wuitschik sat down with Kristine Russell. Kristine is a woman with an impressive resume in healthcare research today, but it didn't start in med school: it started with her experience as a patient and a mom.
Kristine and her daughter, Ellie, suffered sepsis from Group A Streptococcus during childbirth. In the years since, countless specialists have tried to find an exact answer to her daughter's ongoing struggle.
This is why Kristine Russell decided that her daughter was going to have to help write the textbook. Whether her symptoms had never happened before or whether they had simply never been recorded, they were real and happening now. Ellie had to be on the record.
Learn more about Kristine and Ellie's incredible journey, which is now driving massive change in sepsis research.