Integral to building learning health systems
Often in the work we’re doing as part of the BC SUPPORT Unit, we're asked about the impact of collaborating with patient partners in health research. Is it worth it? Why would patients want to get involved? We answer that question in many ways, sometimes referencing the literature, sometimes sharing examples of successful projects. But, as with all that we do, the best answer comes from the patient partners themselves.
Recently, several patient partners recently attended the Centre for Health Services and Policy Research conference, called The system awakens: Building learning health systems in Canada. Before we address those opening questions it’s important to note that a number of patient partners were sponsored to attend this conference through the BC SUPPORT Unit. In order for the whole system to be learning, all the members need to be there, and they were – kudos!
Now, to those questions. When asked for their thoughts, two patient partners from the Fraser region, Teri and Miranda, had the following to say:
Teri said “I found this conference really inspired me as a Patient Voices Member. After listening to all the speakers I came out of the conference with a much clearer vision of the need for ‘patients’ to give input into all things that are being developed, changed, researched, or implemented into the health care system, or any other part of society.”
She not only learned about the “cycle of a Learning System and how important it is to use in the health system,” but also was intrigued by the success stories she heard such as “how in Wales they have improved, and lowered their health care costs, by studying people’s social behavior, and their basic needs, and when they improved them, then the hospital visits drastically dropped, thus saving the government large amounts of money.”
Similarly, Miranda shared that “what I really enjoyed about the conference was the discussions about "Learning Health Systems: that health care professionals/systems need to learn from every patient or health care encounter. This is such a great concept because it reminds people to be present in their work while realizing that each experience is an opportunity to learn and improve their practice and/or the system they work in. As a patient, this makes me feel that I'm not simply a person accessing services, but in accessing those services I am also providing an opportunity for improvement in care for other patients. It encourages me even more to speak up when I feel something needs to change, or even to just share my experiences.”
From Teri and Miranda’s accounts of their experience, we hear the power of patient engagement. Patients are an integral part of the cycle of learning that can contribute to health care improvements. The knowledge and experience of attending that conference may inspire further participation, generate new and innovative ideas, and build confidence. The validation of patient experiences through inclusion, involvement, and engagement is clearly worth it.
By Lupin Battersby, Knowledge Translation Specialist, BC SUPPORT Unit Fraser Centre