Supporting Patient Agency and Self-expression: Using design to rethink how patients’ voices are captured and represented in their care

Marnie Meylor demooij.marnie@mayo.edu

Abstract

As health care payment shifts from fee-for-service to pay-for-value, there is greater pressure to harness a patient’s ability and desire to incorporate care recommendations into their daily life toward positive health outcomes. In response, care models must shift to a participatory approach, in which the patient is encouraged to play an active role in their care. Our team at the Mayo Clinic Center for Innovation used human-centered design to better understand how to enrich collaboration between patients and providers within this new participatory paradigm. Recognizing the importance of care planning in creating a shared roadmap for all those involved in a patient’s care, we sought ways digital tools could support patient agency and expression. To do this, we engaged in a six-month discovery project with our community practice, where we engaged 18 patients and 8 health care providers in an ongoing process of co-creation and rapid prototyping. Through this exploration we found that while enabling patients to self-monitor and track the trajectory of their conditions provides valuable reinforcement of their role in their care, if the plan of care itself does not align with and reflect the patients’ priorities in the first place it will add little value to team-based care and opportunities for improved outcomes. Designing ways for patients to express their priorities presents a unique set of challenges, especially in a system teeming with time constraints. While patients are typically guided to provide a host of data and information to serve in clinical decision making, very little of their perspective is captured within Electronic Health Record (EHR) tools in ways that are useful across a care team. We found opportunities to be more creative with how digital tools can engage patients by supporting their contemplation and articulation of how they are authentically doing, what really they need. By giving patients the tools to envision how the elements within their lives intersect to impact their overall wellbeing, it puts patients in a better position to not only communicate their expectations and needs to their care team, but to advocate for themselves. For providers, this can be a humanizing line of sight into the patients’ status, stability, capacity, and barriers they are facing.  
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