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

Abstract

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.

Patient and family engagement in Alberta Health Services: Improving care delivery and research outcomes

“…The benefits of introducing patient and family advisors include enhanced collaboration among physicians, clinicians, leaders and patients and families and a cultural shift from “doing for” to “doing with.” 6,7 The AHS strives to promote a modified co-design approach as best practice, without limiting participants to the methodology of the experience-based co-design approach. 8 –10 Rather it encourages staff and patients and families to reflect on their experiences, work together to identify improvement priorities, devise prototypes, and implement and evaluate changes. 11 –13 This approach brings patients, families, and staff together to collaborate throughout all the stages of a quality improvement process.…”

Lay Pharmacovigilance and the Dramatization of Risk: Fluoroquinolone Harm on YouTube

“…Aspects of dramatization of risk highlight the importance of considering patient experience in qualitative terms as well. Both big- and small-data analyses could be adapted for use in experience-based co-design (EBCD) projects, which are program initiatives to enhance patient safety through the proactive incorporation of patient experience (Fucile et al 2017).…”

Enhancing patient involvement in quality improvement: How complaint managers see their roles and limitations

“…Several approaches to PI in QI are regularly promoted in HCOs, including patient experience data analysis, experience-based co-designing, 29,30 or partnership with patient advisors. 5,31,32 Complaint handling is another useful but underpromoted and underused gateway to integrate the patient's voice, retrospectively or proactively in QI efforts.…”