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Integrating patient and family member needs, wants and preferences in healthcare is of utmost importance. However, a standardized patient and family engagement model to understand these needs, wants and preferences in order to translate into high quality improvement activities is lacking. Experience based co-design (EBCD) is an approach that enables patients, family members and healthcare providers to co-design improvement initiatives together. In this study, EBCD was employed to: 1) assess the current state of information and educational resources at a local oncology center and 2) partner with patients, family members, and healthcare providers to create quality improvement initiatives targeting identified issues. Three focus groups were conducted: 1) patient and family member-specific, 2) healthcare providerspecific, and 3) all participants (including patients, family members and healthcare providers). Discussion questions were focused around current educational resources, barriers encountered throughout the cancer continuum, and recommendations for improvement. Six themes emerged from the two initial focus groups with patients and family members and healthcare providers: 1) patient-provider communication, 2) accessing information, 3) tailored information, 4) side effect information, 5) caregiver information, and 6) partners in care. Themes were presented to participants to ensure findings accurately depicted their experience and five quality improvement projects were created, aligning with the themes. This study provides an example of how EBCD helped to foster a safe environment, where patients, family members, and healthcare providers worked together in order to improve educational resources.

Experience-based co-design: A method for patient and family engagement in system-level quality improvement