Learning About Patients’ Values
Christy Boyce is a Virtual Health Learning Consultant at Fraser Health. She wrote this blog post reflecting on her experience asking “What matters to you?”
Life in the health care field is busy, but there are key moments under our control where we can slow down and make big improvements. One of the tools we can use to create those moments is to ask our patients, “What matters to you?” When we ask our patients this question, we acknowledge and consider our own biases while allowing the opportunity to really listen to what changes are needed to support patient care. It’s in this listening that we ourselves can grow as health care providers and connect to the needs of our health care communities.
As a project lead and instructional designer, I supported the design of new virtual Diabetes Self-Management classes at Fraser Health. As a part of our larger evaluation of the work, I had the unique and transformative experience of holding virtual patient focus groups to understand the patient experience of our new, interactive classes, which were designed by patients. Our redesign team included Registered Dietitians and Registered Nurses as our subject matter experts, patient partners, unit clerks, operations managers and a Master’s student to support change management and adoption.
Evaluating the Patient Experience
Although our project survey data had created a basic understanding of our patients’ reactions to the learning experience, we wanted to hear more about the patient experience. This would help us decide how to allocate resources for similar projects in the future. Among other things, we wanted to know: Where was the value in the teaching and learning relationships? What did they enjoy about the virtual classes? What activities were most effective for retaining new knowledge?
To evaluate the patient experience more robustly, we held two virtual patient focus groups using Microsoft Teams. Our questions were co-designed by patient partners and nursing students. We used a thorough consent form and intentionally built a safe space for sharing and vulnerability by using concepts from the Fraser Centre Safe Space Support Guide for patient engagement in research. (With thanks to the BC Patient Safety & Quality Council for their resources, which helped to shape this guide).
Learning About Participants’ Values
As the focus group facilitator, I intentionally slowed down and asked “What matters to you the most when you come to a health care education session?” Our participants opened up about their values and how they preferred to receive their education. They spoke about opportunities for connection with other diabetic peers and how this made them feel validated.
Our participants reflected on how accessible the online classes were. Even if they were working, they could still participate. They reflected on the shared experience and emotions they felt during virtual class breakout rooms, during Q&A periods and in facilitated reflections. They spoke of the value of knowledgeable facilitators who could help them understand where and how to access accurate health information. Our patients expressed a desire for learning experiences that included minimal lecturing and more group discussion opportunities and found great value in listening to each other’s stories. They valued a skilled facilitator, guiding their self-reflection and creation of new knowledge which would lead them to behavior changes.
Finally, our participants spoke of a desire to remain connected to each other for longer term support – a sense of a diabetes peer support community – as they dealt with, what for many, was a new and overwhelming diagnosis.
Building Digital Literacy Skills
As an additional bonus, while we were empowering our patients to connect to each other and build a learning community to strengthen their self-management skills, we were also building their digital literacy skills through the use of virtual video classes. Every class created an opportunity to get better at using virtual modalities for health care. We were creating safe spaces to play with new video tools for communication. We were honouring the unique learning characteristics of virtual communities and supporting technological skills development, while our facilitators, often new to virtual classes themselves, demonstrated how to effectively engage and connect online.
I later reflected on the responses to the question “What matters to you?”. Those responses have the power to change both our models of care for chronic illness and guide exemplary health care teaching and learning relationships. Learning design matters. Learning activities should be created with patient partners alongside clinical subject matter experts. Learning together with peers through shared experience creates more opportunities for those “ah-ha!” moments that can change our lives and greatly impact our health.
Slowing Down and Listening
By slowing down and listening, we understand how a lecture approach to learning does not allow an adult learner to feel a sense of respect, authority and confidence in their life experiences. Those experiences are a wonderful resource upon which to build new skills. By listening to our patients tell us about their values when we ask “What matters to you?’, we can design a health care learning experience that powers better community health and wellness.