"Help me figure this out": Qualitative explorations of patient experiences with cancer pathology reports.

OBJECTIVE: For patients with a new cancer diagnosis, the pathology report is a critical tool to support diagnosis and decision-making, yet they are designed for providers, not patients. We sought to qualitatively explore patients' experiences receiving and interpreting pathology reports for breast and colorectal cancers. METHODS: We conducted four focus groups with patients (n = 23) who had received diagnostic or surgical pathology reports for breast cancer, colorectal cancer or polypectomy. Focus groups discussed patients' experiences with pathology reports and recommendations for improving the patient-centeredness of report design. Focus groups were transcribed and thematic analysis was used to explore patient perspectives. RESULTS: Participants described experiences with pathology reports that were fraught with confusion and variability. Three central themes were identified related to how 1) the experience receiving the pathology report, 2) the pathology report language, and 3) the format of pathology reports all influence patient understanding and ability to engage in treatment decision-making. CONCLUSION: Due to their complex medical language and challenging framing, traditional pathology reports can contribute to the confusion and uncertainty patients experience as they navigate a new cancer diagnosis.

Improving the impact of clinical documentation through patient-driven co-design: experiences with cancer pathology reports.

OBJECTIVE: With 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 METHODS: Multiple 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. RESULTS: Although 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. DISCUSSION: The 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. CONCLUSION: This work offers practice-based learnings that can more effectively guide health systems in their clinical documentation redesign efforts.

Improving Communication and Resolution Following Adverse Events Using a Patient-Created Simulation Exercise.

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.