Objective
The response to adverse events can lack patient‐centeredness, perhaps because the involved institutions and other stakeholders misunderstand what patients and families go through after care breakdowns.
Study Setting
Washington and Texas.
Study Design
The HealthPact Patient and Family Advisory Council (PFAC) created and led a five‐stage simulation exercise to help stakeholders understand what patients experience following an adverse event. The half‐day exercise was presented twice.
Data Collection and Analysis
Lessons learned related to the development and conduct of the exercise were synthesized from planning notes, attendee evaluations, and exercise discussion notes.
Principal Findings
One hundred ninety‐four individuals attended (86 Washington and 108 Texas). Take‐homes from these exercises included the fact that the response to adverse events can be complex, siloed, and uncoordinated. Participating in this simulation exercise led stakeholders and patient advocates to express interest in continued collaboration.
Conclusions
A PFAC‐designed simulation can help stakeholders understand patient and family experiences following adverse events and potentially improve their response to these events.
ObjectiveWith the unprecedented rise of patient access to clinical documentation through electronic health records, there is a need for health systems to understand best practices for redesigning clinical documentation to support patient needs. This study used an experience-based co-design approach to inform the redesign of cancer pathology reports to improve their patient-centeredness and impact on patient engagement.Materials and methodsMultiple methods for data collection and stakeholder engagement were used, including Delphi prioritisation with breast and colorectal cancer experts (n=78) and focus groups with patients with cancer (n=23) in the Seattle area. Iterative rounds of consensus generation and reflection were used to elicit themes and design recommendations for the development of patient-centred pathology reports on cancer care.ResultsAlthough each cancer type had nuanced elements to consider, common design requirements emerged around two key themes: (1) clinical documentation language should be framed in a way that informs and engages patients, and (2) clinical documentation format should be leveraged to enhance readability and information flow. Study activities illuminated detailed recommendations to improve the patient-centeredness of pathology reports based on patients’ and clinicians’ lived experience.DiscussionThe design requirements that emerged from this study provide a framework that can guide the rapid development of patient-centred pathology reports for all cancer types. Even further, health systems can replicate these methods to guide experience-based co-design of clinical documentation for contexts beyond cancer care.ConclusionThis work offers practice-based learnings that can more effectively guide health systems in their clinical documentation redesign efforts.
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